3 years ago this November 2021, i was "healthy" other than epilepsy and AMPS/CRPS, and one night at 1.30 am, i thought i was having a heart attack! My bf at the time put his apple watch on, and my HR was at 200BPM!!!!!!!! 😮😮😮😮 i got diagnosed with pots in the emergency room as my ER doctor's wife has pots. Yet im still to get a "formal" diagnosis all because i have CPTSD and generalised anxiety disorder. Finally now in march of 2024, im FINALLY seeing a cardiologist for a formal diagnosis because after 3 years, i found a dr who believed me 😭❤️
By chance did you take CV shots? I had several heart issues on 3rd day of my guys second shots. I didn’t take shots because my autoimmune overreacts, as it did in crowds that summer, ER every time I flew!!! Stones concert with old people all ‘vaxed?’ Was ready for an ambulance, but too embarrassed! Dizzy, SOB…
8:02 Your story really resonates with me-everything you described, from becoming depressed and feeling stuck to hating your job, mirrors what I’ve been going through this year. I’m a junior in high school, recently diagnosed with POTS. I’m also about to undergo heart and brain scans. Honestly, I’ve been feeling dizzy for *years*, but every doctor I saw brushed it off as something "normal for girls." So, I kept pushing through. The past three months, though, have been unbearable. I haven’t been able to clean, keep up with homework (I went from straight A’s to struggling with B’s), or connect with anyone. I was awful to my boyfriend-now my ex-and the guilt of it all made me feel like a terrible person. I couldn’t figure out what was wrong with me, but deep down, I knew it was more than just “being a girl.” When I researched untreated POTS symptoms, I realized I’d already hit the more severe end of the spectrum. It’s frustrating to think that if doctors had taken me seriously earlier, I might not be here now, trying to pick up the pieces of my life. Your video gave me so much comfort-knowing I’m not alone in this journey makes it a little easier to cope. Thank you for sharing your story.
Thank you for your story. I suffer with POTS and heart disease. Funny enough, pots was the easier diagnosis to get, but I kept searching because it didn’t seem like enough and ended up get open heart surgery! Crazy world we live in! I’m glad to have TH-cam so we can share our stores!
Thank you so much for your story. I’m in highschool and I struggle with the symptoms of pots and Eds. I came close to losing all my credits because of all my sick days and I began to regard myself as lazy and just simply depressed and that the pain and fatigue wasn’t as bad as I perceived it. I love to hear that there are people that share this experience.
you are an answer to many many prayers in my life. i’ve been suffering from pots and i get married in november. i want to be able to be a great wife and work and do what i want to do but it’s SO hard. im going to spend the next few days binge watching all of your videos so i can get some help.
your story reminds me so much of my own! I have raynauds,POTS,syncopal seizures,PCOS,Chronic migraines,and fibromyalgia. when I pass out from the POTS I flatline so I ended up needing a pacemaker but I'm so glad the compression socks help you!.I struggle day to day and get exhausted just from talking but your story gives me a little hope that things can get better or at least easier to cope with. It took me a long time as well to get a diagnosis and was wrongly diagnosed a bunch of times over a period of about 10 years.Its an awful process but we all get through it somehow.hope you are doing well & staying safe ❤
You sound a bit like me. My POTS episodes have a spike in heart rate, but then it crashes to where my heart has bradycardic pauses for several seconds at a time. Have they screened you for the various types of Ehlers Danlos syndrome? It turned out that my fibromyalgia was actually hypermobile type Ehlers Danlos syndrome.
@@eltonmaragona9014 I've experienced difficulties with talking, due to my POTS. Are you getting out of breath, slurring your speech, or just getting brain fatigue from talking? Talking while seated is much better than talking while standing. Medications can help. Some decent POTS medications include Ivabradine, Mestinon, Guanfacine, or Clonidine. It might take time to find which works best for you.
I JUST got diagnosed with POTS and watching this video, Ive struggled my whole life since I was about 8 and just like you said EVERY time we do blood work u have small veins and knew which they'd get. it makes me feel so understood FINALLY that I'm not crazy it's not in my head. Thank you truly for your videos/channel. It has helped me tremendously 🙏
Ugh! I hate that stage of not knowing - can’t figure it out - start to think you’re crazy. Uuuhhh it’s the worst. And the most necessary time to support someone through once you’ve been through it yourself.
I never pass out either, I go into the shakes and then seizures. Thank you for sharing your story. I had bulging discs,pinched nerves,peripheral neuropathy ,and Celiac disease,so I was already seeing my general Dr,a physical therapist, and a neurologist when the presyncope and the seizures started,at this point he had already take ct scan, x rays,MRI,blood work and 2 EMGs. I wound up in the hospital after having a seizure my legs wouldn't work to hold up my body, so from that point in the hospital it took 6 months to find POTS after he tested me for every autoimmune under the sun,then he did EEG,more mri,more blood work,EKG. Finally I thought he was just frustrated and over it and was giving me busy work when he told me to go home and take my vitals for 30 days in the am and pm take down numbers laying,down, sitting up and standing up. So basically an at home tilt table test. When I went back after the 30 days,he took all of 2 minutes looking at numbers and he said you have POTS. Evidently my HR and sometimes BP will go up by 40 points with each position, BP sometimes just goes up by 20 not 40 but the HR is the main thing they look at . That's not my full long story,just a condensed version, jt I think its neat and interstate to hear other people's chronic illness stories.
I get those twitches and seizures as well, although my POTS medications have nearly eliminated those incidents. Have they ever run you through the Beighton hypermobility test and screened you for Ehlers Danlos syndrome? POTS was the first sign that I have hypermobile type Ehlers Danlos syndrome as an underlying medical condition and a unifying diagnosis to all of my health issues.
@@Dulcimerist yes they habe tested me and I don't have EDS. I can't take any meds for my POTS ,my asthma is bad so the Dr's said no to the beta blockers and I had allergic reactions to the 2 steroid meds they tried me on. So far I'm just able to do the preventative inhaler for my asthma and it has a small amount of steroid in it which does help the POTS a little.
@@heathertowe6280 When people can't take beta blockers, often Ivabradine works well. I had a bad reaction to beta blockers, but Mestinon during the day and a small nightly dose of Clonidine pretty much eliminated my POTS. Guanfacine is another option to treat POTS. Have they tried you on any of those?
You sharing your story is so powerful! I have POTS and just like you I felt better lying down but I never connected the position my body was in to my symptoms. Including freezing feet, headaches, dizziness, etc. In hindsight it makes so much sense! Now my doctor has me on a strict max 10 min standing, max 20 min sitting and then lying down. It's helping some but I'm excited to try other things like possibly IVs or stockings.
Use compression socks as much as you can but also remember to keep working on your calf muscles, they have to be strong as they play an essential part in regulating this condition!
hi everyone. Stay strong. ur stories are amazing and you guys are strong. i dont have pots, im here because my friend have pots and i had never heard of it so i came to see what it was. Im so proud of yalls strenght
I also have fibromyalgia - that was my 1st diagnosis about 12 years ago. To me, fibro sounds like a term they use to just give the symptoms a name - like colic for a baby...no reason why they cry, but here’s a name for it. 2019 I was real sick and had to call out of work, which I very rarely do. After that, the fatigue and exhaustion, along with brain fog and other symptoms, took a big hit! My doctor kept saying it was just anxiety - I have GAD I KNOW what anxiety feels like and that wasn’t it! I made an appointment with a local cardiologist myself, and that’s when I got my POTS diagnosis! It felt so relieving to finally have some kind of answer, I nearly cried in her office! Thank you for sharing your story!
Thanks for sharing your story with me. I agree that fibro is sometimes just thrown around to say "you have lots of pain and fatigue" It's frustrating! I am glad you got your diagnosis too!
Yeah, they diagnosed me with fibromyalgia as well, because they didn't know what else to test me for. It turned out that I actually had hypermobile type Ehlers Danlos syndrome.
@@Truerealism747 I 'm surviving. With EDS, it's all about doing the best to try to minimize symptoms and keeping the body in as good of shape as possible, and being careful to avoid injuries.
@@Dulcimerist thankyou for your reply how do we no how much is eds or central sensitisation the neurologist says my chronic upper back muscle pain is migraine ime going to try a tmj splint the tmj fybromyalgia connection
Your story is so similar to mine. One day may body just “shot down”, I have dysautonomia, POTS , EDS, chronic fatigue, IBS. It was triggered when I was 42. Never will know how. You are so young and have loving support. You’re going to be great! ( And it does get better 😉, I’m 46 now) the part that hasn’t gotten better AT ALL, is people telling me “it’s just in my head”, “get over it”, “be more positive “… I wouldn’t want them to feel what is is for me… but I don’t think the day they will believe in this is coming any soon. 🙏🏻
Aimee, I've been watching your channel a lot recently. Thank you for the reminder of Dysautonomia international and for your recommendation on the Dysautonomia Project book. I've been doing as much research as I can. So glad you figured out your diagnosis, and thank you for sharing ☺️ what a great husband, learning to serve his new wife in that hard season!
the worst is people telling you to be positive. how can you be positive when your head feels like a bomb is going to go off. then you get I don't know how you've put up with it for so long. I had a headache for a day and couldn't handle it
I am living with Fybro/ Chronic Fatigue daily and it is truly debilitating. I can’t imagine having P.O.T.S too. Thank you for being a good example of living with a chronic illness😁👍🏻
Wow, thank you. Your story is so relatable. I should wear my compression socks more often! I find sitting in the bath with Epsom salt is so much more tolerable than a shower!
I had same thing with g.i issues bloating , indigestion , climbing stairs was almost impossible with breathing issue's ,hot showers made me feel faint and anxious dizzy , fast heart rate after eating , slow heart rate because i was put on beta blocker metoprolol, fatigue, palpitations all the time !! ..i went to my cardiologist and he couldn't figure out what was wrong with me so i left him found a new cardiologist and new cardiologist thinks i have pots he said older generations of cardiologists are Clueless about pots . i feel better when laying down but not all the time , i also have a small sliding hiatal hernia that i think might be causing some of my palpitations. It's literally been a nightmare thanks for your story 🙂
May I ask when you started having issues? I started 3rd day after my partner got his second CV ‘vaxine’….pfir brand. Throwing up, dizzy, couldn’t breathe. Large crowds that summer, aka airports and airplanes I was always at ER. Bed bound with crps, up to bathroom? Pulse 125. Take trash out? Pulse 175! Scary! Blood pressure 149/199….throwing up 3 yrs later. I never took a shot, boyfriend finally stopped ‘boosting’.
You should look into supplementing B vitamins (B1, B6, B12), as well as Vitamin D (D2, D3). Along with these, Magnesium, Zinc, Vitamin K2, Calcium & Potassium should also be taken. I've read testimonies of many folks suffering with this diagnosis who have had their lives transformed practically overnight when they began taking Vitamin D3 just by itself. There are some Dr.'s here on YT that give valuable information on treating this with much safer, natural methods such as the ones I mentioned. Dr. Berg is one that comes mind, off the top of my head.
I have orthostatic hypotention which i found out after a year and a half of hell being in and out of the doctors office. This started out of nowhere for me after getting covid and hasn't stopped since. I got the diagnosis from a tilt table test/ treadmill stress test. If you feel like you're going to faint when you go from laying to standing or when you're working out or being outside in warm weather ask your doctor for these tests! What helps me: compression socks up to my knees, drinking a gallon of water a day, eating enough salt to be able to hold that water, never work out without eating or drinking water first. I was also given medicine that raises my blood pressure but i only take this when i know for sure im going to faint if i dont take it. Hope this helps someone.
So far just told I have dysautanomia but to treat it like it’s pots 🤦🏻♀️ and I’ve been struggling with it. It’s made me so depressed but trying to jump out of it. I was also diagnosed with fibro before I found out I had heds. Drs are frustrating
Listening to some of your story I see myself. I went through a lot of similar things. The worst thing for me was my boyfriend at the time was upset with me for not being able to do things and for quitting. He thought I was faking it. He ended up leaving me. I’m glad you have a wonderful husband to support you and that you’re doing better! It’s so hard to live this way and even though I’m not officially diagnosed (we don’t have tilt table test here) my internal doctor says it’s likely POTS. I too have had every test done under the sun and sometimes my blood even showed high white cells. They said it wasn’t high enough tho.
13:38 Wait, I didn’t know that pots caused your veins to be harder to find. I tried to give blood a couple of months ago and they stuck me 5 times!! And I’m also always so cold!
Thanks for helping to spread the word about POTS and being so open with your story. Random question but I wanted to reach out and ask if you've ever had to get a colonoscopy with having POTS? So nervous. I have one scheduled for Monday.
I have POTS and Ehlers Danlos syndrome, and have had two colonoscopies. There were no complications, but they had to be careful since EDS increases the risk of perforations and other issues. If you have POTS, but not EDS, just make sure they know all of the medications you're on. The prep work will be the roughest part, so you might want to request IV fluids because of your POTS.
@@Dulcimerist thank you so much for replying! I only have POTS. I just spoke with my POTS specialist and he told me to drink drink drink during the prep and ask for a liter of fluids during or after the procedure. Thank you so much for the encouragement. It's hard to find tips for our specific needs sometimes.
Yes, I had a colonscopy while having POTS. However I didn't know I had POTS at that point (hence why I got the colonscopy, trying to figure out what was wrong haha) So honestly I don't remember how my POTS symptoms were because I was so sick at that time (not treating my POTS at all). Doing the prep (aka drinking a gallon of laxatives) wasn't fun but I don't remember feeling anything that was too scary. Sorry I'm not much help. Just know that it went fine for me (as far as I can remember)
@@Aimee_Esther fair enough! Thank you for replying. I'm glad things went okay for you though. 💓 my biggest thing I think is loss of control and such. I can do this!! I think... lol 😆
@@whitney0524 They'll knock you out for it, and you'll wake up in the recovery room and it'll be all done. They've always put an IV line in my arm, so that would be an easy time to get a liter or two of saline fluids put into you - just make sure your doctor puts in an order for the saline infusion, if your doctor feels that would help you recover better. Once you get the prep work done, the rest of it is super easy.
Worth noting that nearly each and every one of those are symptoms of/caused by being deficient in one's D & B vitamins. That also means they could all be remedied by supplementing said vitamins.
Ive already been diagnosed w fibromyalgia and chronic fatigue syndrome and im a chronic pain sufferer. I also have crohns disease and interstitial cystitis, a bladder disease, along w IIH which is Idiopathic Intercranial Hypertention. And i have severe hypertenten with my blood pressure and my heart so im on a couple of medications for that. Was diagnosed w sinus tachycardia and i have been having trouble w fluid retention lately sometimes putting on as much as 20 lbs of fluid. Started seeing a Cardiologist, he has me on 80 mg of lasix a day for that and saw a Cardiac Surgeon for my veins, I have to have a Venus Seal procedure in each leg and he told me to start wearing compression socks. I had already had my suspicions that i might have POTS, so i was hoping the socks would help. Plus i have a severe sodium deficiency. I was told by my Neurologist to increase my salt intake so i make sole water and add that to my bottle of filtered water i drink every day, plus i add salt when i cook. An ER doc checked my levels and said i wasnt doing enough and told me to double what i was doing. So i basically drink salt water all day, every day and my tests show my sodium levels hit bare minimum. I have many other symtoms too, like constant vertigo for most of my life, nausea all the time, balance issues, fainting, racing heart, anxiety issues, brain fog, memory issues, attention and focus issues. My Cardiologist said we have to get my veins fixed first then we can test for POTS so it will be more accurate but hes pretty sure it will be a positive result. But what has been helping me has been increasing my sodium levels and now wearing the compression socks. The doc wants me to wear them every day now.
Find the video on my channel called “causes of Dysautonomia.” Pots/dysautonomia is caused by damage to the neurons mine was caused by a TBI I got as a child. I was working as a medic in 2020 and got Covid and it made my pots/dysautonomia put me on my death bed for 3-4 years… I am now very well after I figured out neurogenesis. Still have dysautonomia/pots but very well managed
I am dealing with something that they don’t know anything about. I have seen every doctor & specialist under the sun. My problem is when I walk more than 3 minutes my heart rate increases really high & my oxygen levels drop to the 80s. When I lay down my heart rate increases as well & it causes me to shake & feel like I’m about to pass out. I get dizzy standing & it’s hard trying to breath a lot. I’m on oxygen now but all my test come back normal but I’m still not getting better. I looked up POTS & all my symptoms are pointing to that. I only get relief when I am sitting up & sometimes not even that. I’m tired of being annoyed & thinking it’s all in my head & it’s not. I been dealing with his for about a year now
@@Aimee_Esther Can you tell me did you have any of my symptoms that I am having? I only feel ok sitting right up & when I stand my heart rate increases 30 points feels like I’m About to faint
@@mrsbrittanyboyd9882 Sitting helps me a little but i do best when I am lying down. Standing makes me dizzy and I have a lot of fatigue and muscle pain
@@Aimee_Esther laying down used to help me more & they thought I had CSF bc of my headaches & laying down only helped but in December that all stopped. My shoulder blades hurts so bad & my legs & they thought it was due to low vitamin D but that wasn’t the case. Now I’m back on a heart monitor & it’s like my doctor doesn’t even want to test me for POTS
Thanks for this! I’m a teenager and currently wondering if I have pots, pretty much all the signs are there and I’m making a doctors appt to hopefully find out soon!❤
I live how uou commented about the small veins. I legit just finished seeing my dr with blood work and they coyldnt take blood cause of how small and nonexistent my veins are. Ive been monitoring my heart rate past few days and noticed my hr is low with little to no symptoms but the minute i stand up its as if the energy i just had was zapped from me, my breathis gets so horrible i got an inhaler (which barely works) and i also get the feelung like im about to faint. I told this to the dr earlier today and and they put in a referral for a cardiologist so im pretty sure im on the rivht track. I actually heard of pots from watching a service animal in action video. The owner has pots and her service animal alerts her of an episode.
I’m 22 years old. One random day almost a year ago my life changed and haven’t been the same since. My heart rate is completely abnormal all of the time. High randomly but then will plummet and this pattern keeps going. I’ve been so active my whole life and now I cannot workout anywhere near the way I used to. I’m exhausted all the time, my vision is blurry, hearing is muffled, and feeling like I’m going to pass out just sitting doing nothing. Can anyone relate because I’ve been to several doctors and no one knows what I have it’s so exhausting. My stress test was normal, blood work is normal, EKGs show arrhythmias. Showers are a nightmare, school and work is impossible all I want to do is lay down and I’m becoming hopeless and depressed.
POTS as a teacher standing all day really is awful. I also crashed on the couch every afternoon and barely moved again. Then I fainted on a student and got partially diagnosed.
Thank you for posting I am in the hospital right now having pots problems and My Dr just told me that it was food poisoning that triggered my G.I. issues
Living with type 1 diabetes since 25; sibo, pots, gastroparesis, chronic fatigue, constipation, stomach pain, OCD since 30, screw this chronic illness stuff, acupuncture and chiropractic care are the only things that help. 2 questions have you ever gotten to the bottom of your chronic illness stuff? And how did u find out your spine was misaligned? where do you go for testing? looking into lyme next
I'm curious to know what your heart rate is after about 20 min Of standing like without the socks? i have been trying to get diagnosed with this condition for years but mine is more mild I believe or could just be inappropriate sinus tachycardia. I do the pool man's tilt test by checking my heart rate with a wrist cuff and mine is usually around 110 after just standing for a while. Like you I never pass out but have the sensation occasionally.
I just had my tilt table test and I’m so confused and feeling defeated. I had a drop in heart rate, blood pressure, and fainted. But the doctor said my test was negative. It’s been a year of testing and I have no answers. Has anyone else experienced this?
I am right now trying to figure out if what I have is pots, I have shortness of breath, lightheaded, dizzy, especially standing, exhausted where I feel like all I can do is lay in bed all day likei just feel like something is wrong
Sorry for spamming your comment section! I want to ask your advice for school. Last week I was at my worst and knew that I can’t do this anymore. I don’t even feel good while sitting at a desk all day. What should I do to last me throughout the year? I have perfect attendance for I think this will be my 8 year and I don’t want to lose it 😢But I probably will break my streak if I keep getting worse
Come talk to me! I have an online community and can answer all your questions in our live calls. Here's a link to try it out for a free 20 days :) aimeeesther.podia.com/community/117796/monthly/buy
What were symptoms that made you or your dr consider POTS? Did you experience rashes when outside? Did you experience nausea/vomiting because of being out in the sun?
Please try B1 vitamins meth yl b vitamins. If you can find a methyl B1 that would be awesome. Your body is lacking very much in b vitamins, especially B1
I've tried every diet you can imagine. From vegan to carnivore. Currently I only eat meat... Still have POTS. I'm sure diet helps some people, which is great! But others might still have issues even if they eat right. I wish that diet was the answer for me. I am so happy that you found something that works for you but never assume that just because something works for you that it works for others. We are all on our own journey.
*JOIN THE COMMUNITY: aimeeesther.podia.com/community
3 years ago this November 2021, i was "healthy" other than epilepsy and AMPS/CRPS, and one night at 1.30 am, i thought i was having a heart attack! My bf at the time put his apple watch on, and my HR was at 200BPM!!!!!!!! 😮😮😮😮 i got diagnosed with pots in the emergency room as my ER doctor's wife has pots. Yet im still to get a "formal" diagnosis all because i have CPTSD and generalised anxiety disorder.
Finally now in march of 2024, im FINALLY seeing a cardiologist for a formal diagnosis because after 3 years, i found a dr who believed me 😭❤️
By chance did you take CV shots? I had several heart issues on 3rd day of my guys second shots. I didn’t take shots because my autoimmune overreacts, as it did in crowds that summer, ER every time I flew!!! Stones concert with old people all ‘vaxed?’ Was ready for an ambulance, but too embarrassed! Dizzy, SOB…
Betablocker helps me, I take an extra when I get dizzy and pukey…most have given up on the shots…So, hopefully I will stay under control?
8:02 Your story really resonates with me-everything you described, from becoming depressed and feeling stuck to hating your job, mirrors what I’ve been going through this year. I’m a junior in high school, recently diagnosed with POTS. I’m also about to undergo heart and brain scans. Honestly, I’ve been feeling dizzy for *years*, but every doctor I saw brushed it off as something "normal for girls." So, I kept pushing through.
The past three months, though, have been unbearable. I haven’t been able to clean, keep up with homework (I went from straight A’s to struggling with B’s), or connect with anyone. I was awful to my boyfriend-now my ex-and the guilt of it all made me feel like a terrible person. I couldn’t figure out what was wrong with me, but deep down, I knew it was more than just “being a girl.”
When I researched untreated POTS symptoms, I realized I’d already hit the more severe end of the spectrum. It’s frustrating to think that if doctors had taken me seriously earlier, I might not be here now, trying to pick up the pieces of my life.
Your video gave me so much comfort-knowing I’m not alone in this journey makes it a little easier to cope. Thank you for sharing your story.
Thank you for your story. I suffer with POTS and heart disease. Funny enough, pots was the easier diagnosis to get, but I kept searching because it didn’t seem like enough and ended up get open heart surgery! Crazy world we live in! I’m glad to have TH-cam so we can share our stores!
Oh dang! I am so sorry you had to get heart surgery. That sounds so scary. You are amazing!
You are so you young?!
I’m so sorry you’ve been through that x I think I am similar. What were your symptoms of heart disease if you don’t mind me asking?
Can you please tell more about how you discovered other disease and what was it, and how are you feeling now
Thank you so much for your story. I’m in highschool and I struggle with the symptoms of pots and Eds. I came close to losing all my credits because of all my sick days and I began to regard myself as lazy and just simply depressed and that the pain and fatigue wasn’t as bad as I perceived it. I love to hear that there are people that share this experience.
you are an answer to many many prayers in my life. i’ve been suffering from pots and i get married in november. i want to be able to be a great wife and work and do what i want to do but it’s SO hard. im going to spend the next few days binge watching all of your videos so i can get some help.
your story reminds me so much of my own! I have raynauds,POTS,syncopal seizures,PCOS,Chronic migraines,and fibromyalgia. when I pass out from the POTS I flatline so I ended up needing a pacemaker but I'm so glad the compression socks help you!.I struggle day to day and get exhausted just from talking but your story gives me a little hope that things can get better or at least easier to cope with. It took me a long time as well to get a diagnosis and was wrongly diagnosed a bunch of times over a period of about 10 years.Its an awful process but we all get through it somehow.hope you are doing well & staying safe ❤
Oh I am so sorry you've had to go through that. You are a fighter and inspire me!
You sound a bit like me. My POTS episodes have a spike in heart rate, but then it crashes to where my heart has bradycardic pauses for several seconds at a time. Have they screened you for the various types of Ehlers Danlos syndrome? It turned out that my fibromyalgia was actually hypermobile type Ehlers Danlos syndrome.
@@eltonmaragona9014 I've experienced difficulties with talking, due to my POTS. Are you getting out of breath, slurring your speech, or just getting brain fatigue from talking? Talking while seated is much better than talking while standing. Medications can help. Some decent POTS medications include Ivabradine, Mestinon, Guanfacine, or Clonidine. It might take time to find which works best for you.
Sweetie, I recently was put on Topomax and my life has changed!
Girl, you literally just made me laugh and cry. Thanks so much for your story! I hope you’re doing well.
I JUST got diagnosed with POTS and watching this video, Ive struggled my whole life since I was about 8 and just like you said EVERY time we do blood work u have small veins and knew which they'd get. it makes me feel so understood FINALLY that I'm not crazy it's not in my head. Thank you truly for your videos/channel. It has helped me tremendously 🙏
Ugh! I hate that stage of not knowing - can’t figure it out - start to think you’re crazy. Uuuhhh it’s the worst. And the most necessary time to support someone through once you’ve been through it yourself.
I never pass out either, I go into the shakes and then seizures. Thank you for sharing your story. I had bulging discs,pinched nerves,peripheral neuropathy ,and Celiac disease,so I was already seeing my general Dr,a physical therapist, and a neurologist when the presyncope and the seizures started,at this point he had already take ct scan, x rays,MRI,blood work and 2 EMGs. I wound up in the hospital after having a seizure my legs wouldn't work to hold up my body, so from that point in the hospital it took 6 months to find POTS after he tested me for every autoimmune under the sun,then he did EEG,more mri,more blood work,EKG. Finally I thought he was just frustrated and over it and was giving me busy work when he told me to go home and take my vitals for 30 days in the am and pm take down numbers laying,down, sitting up and standing up. So basically an at home tilt table test. When I went back after the 30 days,he took all of 2 minutes looking at numbers and he said you have POTS. Evidently my HR and sometimes BP will go up by 40 points with each position, BP sometimes just goes up by 20 not 40 but the HR is the main thing they look at . That's not my full long story,just a condensed version, jt I think its neat and interstate to hear other people's chronic illness stories.
Thank you for sharing your story! You are amazing! Chronic illness can be so hard to live with. You got this! Keep fighting!
I get those twitches and seizures as well, although my POTS medications have nearly eliminated those incidents.
Have they ever run you through the Beighton hypermobility test and screened you for Ehlers Danlos syndrome? POTS was the first sign that I have hypermobile type Ehlers Danlos syndrome as an underlying medical condition and a unifying diagnosis to all of my health issues.
@@Dulcimerist yes they habe tested me and I don't have EDS. I can't take any meds for my POTS ,my asthma is bad so the Dr's said no to the beta blockers and I had allergic reactions to the 2 steroid meds they tried me on. So far I'm just able to do the preventative inhaler for my asthma and it has a small amount of steroid in it which does help the POTS a little.
@@heathertowe6280 When people can't take beta blockers, often Ivabradine works well. I had a bad reaction to beta blockers, but Mestinon during the day and a small nightly dose of Clonidine pretty much eliminated my POTS. Guanfacine is another option to treat POTS. Have they tried you on any of those?
Your blood needs extra support like drinking 3 litres of water a day...
Don't cut down on salt as you'll need it if you got POTS.
You sharing your story is so powerful! I have POTS and just like you I felt better lying down but I never connected the position my body was in to my symptoms. Including freezing feet, headaches, dizziness, etc. In hindsight it makes so much sense!
Now my doctor has me on a strict max 10 min standing, max 20 min sitting and then lying down. It's helping some but I'm excited to try other things like possibly IVs or stockings.
So glad you have found things that work for you! Keep fighting! We will get through this together. :)
@@Aimee_Esther Thank you! Your comment means a lot. I wish you the best!
Use compression socks as much as you can but also remember to keep working on your calf muscles, they have to be strong as they play an essential part in regulating this condition!
hi everyone. Stay strong. ur stories are amazing and you guys are strong. i dont have pots, im here because my friend have pots and i had never heard of it so i came to see what it was. Im so proud of yalls strenght
I also have fibromyalgia - that was my 1st diagnosis about 12 years ago. To me, fibro sounds like a term they use to just give the symptoms a name - like colic for a baby...no reason why they cry, but here’s a name for it.
2019 I was real sick and had to call out of work, which I very rarely do. After that, the fatigue and exhaustion, along with brain fog and other symptoms, took a big hit! My doctor kept saying it was just anxiety - I have GAD I KNOW what anxiety feels like and that wasn’t it! I made an appointment with a local cardiologist myself, and that’s when I got my POTS diagnosis! It felt so relieving to finally have some kind of answer, I nearly cried in her office!
Thank you for sharing your story!
Thanks for sharing your story with me. I agree that fibro is sometimes just thrown around to say "you have lots of pain and fatigue" It's frustrating! I am glad you got your diagnosis too!
Yeah, they diagnosed me with fibromyalgia as well, because they didn't know what else to test me for. It turned out that I actually had hypermobile type Ehlers Danlos syndrome.
@@Dulcimerist how are you now I have eds
@@Truerealism747 I 'm surviving. With EDS, it's all about doing the best to try to minimize symptoms and keeping the body in as good of shape as possible, and being careful to avoid injuries.
@@Dulcimerist thankyou for your reply how do we no how much is eds or central sensitisation the neurologist says my chronic upper back muscle pain is migraine ime going to try a tmj splint the tmj fybromyalgia connection
Your story is so similar to mine. One day may body just “shot down”, I have dysautonomia, POTS , EDS, chronic fatigue, IBS. It was triggered when I was 42. Never will know how. You are so young and have loving support. You’re going to be great! ( And it does get better 😉, I’m 46 now) the part that hasn’t gotten better AT ALL, is people telling me “it’s just in my head”, “get over it”, “be more positive “… I wouldn’t want them to feel what is is for me… but I don’t think the day they will believe in this is coming any soon. 🙏🏻
Hi-any chance you had Covid or another bad virus right before it started?
Aimee, I've been watching your channel a lot recently. Thank you for the reminder of Dysautonomia international and for your recommendation on the Dysautonomia Project book. I've been doing as much research as I can. So glad you figured out your diagnosis, and thank you for sharing ☺️ what a great husband, learning to serve his new wife in that hard season!
Yes! Those are great resources. I don't keep many hard copy books (usually my kindle) But Dysautonomia Project is one of the few I keep!
the worst is people telling you to be positive.
how can you be positive when your head feels like a bomb is going to go off.
then you get
I don't know how you've put up with it for so long. I had a headache for a day and couldn't handle it
I am living with Fybro/ Chronic Fatigue daily and it is truly debilitating. I can’t imagine having P.O.T.S too. Thank you for being a good example of living with a chronic illness😁👍🏻
THE SMALL VEINS & “I don’t miss” was actually my life when conventional medicine was trying to figure things out for months.. feel you.:(
Me too ✋
Wow, thank you. Your story is so relatable. I should wear my compression socks more often! I find sitting in the bath with Epsom salt is so much more tolerable than a shower!
Thank you so much for this video I have been struggling for over a year with these same symptoms and I am hoping once I see my GP they will listen.
Thank's for sharing your story.
Thanks for listening
I had same thing with g.i issues bloating , indigestion , climbing stairs was almost impossible with breathing issue's ,hot showers made me feel faint and anxious dizzy , fast heart rate after eating , slow heart rate because i was put on beta blocker metoprolol, fatigue, palpitations all the time !! ..i went to my cardiologist and he couldn't figure out what was wrong with me so i left him found a new cardiologist and new cardiologist thinks i have pots he said older generations of cardiologists are
Clueless about pots . i feel better when laying down but not all the time , i also have a small sliding hiatal hernia that i think might be causing some of my palpitations. It's literally been a nightmare thanks for your story 🙂
May I ask when you started having issues? I started 3rd day after my partner got his second CV ‘vaxine’….pfir brand. Throwing up, dizzy, couldn’t breathe. Large crowds that summer, aka airports and airplanes I was always at ER. Bed bound with crps, up to bathroom? Pulse 125. Take trash out? Pulse 175! Scary! Blood pressure 149/199….throwing up 3 yrs later. I never took a shot, boyfriend finally stopped ‘boosting’.
you are really a role model for people like me who are suffering from autoimmune disease
Thank you! :)
Pots isn't autoimmune is it
I don't pass out either and I have POTS.
I have no problem with getting my blood drawn though.
Just curious- are you gluten free? It can help with a lot of inflammation related with POTS.
Just got diagnosed 2 days ago and I just want to learn how to be okay… but hearing this makes me feel like I’m not alone
Stay strong love
You should look into supplementing B vitamins (B1, B6, B12), as well as Vitamin D (D2, D3). Along with these, Magnesium, Zinc, Vitamin K2, Calcium & Potassium should also be taken. I've read testimonies of many folks suffering with this diagnosis who have had their lives transformed practically overnight when they began taking Vitamin D3 just by itself. There are some Dr.'s here on YT that give valuable information on treating this with much safer, natural methods such as the ones I mentioned. Dr. Berg is one that comes mind, off the top of my head.
I have orthostatic hypotention which i found out after a year and a half of hell being in and out of the doctors office.
This started out of nowhere for me after getting covid and hasn't stopped since.
I got the diagnosis from a tilt table test/ treadmill stress test. If you feel like you're going to faint when you go from laying to standing or when you're working out or being outside in warm weather ask your doctor for these tests!
What helps me: compression socks up to my knees, drinking a gallon of water a day, eating enough salt to be able to hold that water, never work out without eating or drinking water first.
I was also given medicine that raises my blood pressure but i only take this when i know for sure im going to faint if i dont take it.
Hope this helps someone.
Sounds like what I am going through. Question do you get get convolutions when it gets too hot with a fast heart rate?
Mine started with vision changes, then I noticed the lightheadedness with standing
So far just told I have dysautanomia but to treat it like it’s pots 🤦🏻♀️ and I’ve been struggling with it. It’s made me so depressed but trying to jump out of it. I was also diagnosed with fibro before I found out I had heds. Drs are frustrating
Listening to some of your story I see myself. I went through a lot of similar things. The worst thing for me was my boyfriend at the time was upset with me for not being able to do things and for quitting. He thought I was faking it. He ended up leaving me. I’m glad you have a wonderful husband to support you and that you’re doing better! It’s so hard to live this way and even though I’m not officially diagnosed (we don’t have tilt table test here) my internal doctor says it’s likely POTS. I too have had every test done under the sun and sometimes my blood even showed high white cells. They said it wasn’t high enough tho.
13:38 Wait, I didn’t know that pots caused your veins to be harder to find. I tried to give blood a couple of months ago and they stuck me 5 times!! And I’m also always so cold!
Thanks for helping to spread the word about POTS and being so open with your story.
Random question but I wanted to reach out and ask if you've ever had to get a colonoscopy with having POTS? So nervous. I have one scheduled for Monday.
I have POTS and Ehlers Danlos syndrome, and have had two colonoscopies. There were no complications, but they had to be careful since EDS increases the risk of perforations and other issues. If you have POTS, but not EDS, just make sure they know all of the medications you're on. The prep work will be the roughest part, so you might want to request IV fluids because of your POTS.
@@Dulcimerist thank you so much for replying! I only have POTS. I just spoke with my POTS specialist and he told me to drink drink drink during the prep and ask for a liter of fluids during or after the procedure.
Thank you so much for the encouragement. It's hard to find tips for our specific needs sometimes.
Yes, I had a colonscopy while having POTS. However I didn't know I had POTS at that point (hence why I got the colonscopy, trying to figure out what was wrong haha) So honestly I don't remember how my POTS symptoms were because I was so sick at that time (not treating my POTS at all). Doing the prep (aka drinking a gallon of laxatives) wasn't fun but I don't remember feeling anything that was too scary. Sorry I'm not much help. Just know that it went fine for me (as far as I can remember)
@@Aimee_Esther fair enough! Thank you for replying. I'm glad things went okay for you though. 💓 my biggest thing I think is loss of control and such. I can do this!! I think... lol 😆
@@whitney0524 They'll knock you out for it, and you'll wake up in the recovery room and it'll be all done. They've always put an IV line in my arm, so that would be an easy time to get a liter or two of saline fluids put into you - just make sure your doctor puts in an order for the saline infusion, if your doctor feels that would help you recover better.
Once you get the prep work done, the rest of it is super easy.
Anxiety, depression , ADHD, gastalporesis fibromyalgia, IBS, and endometriosis seem to be common duel diagnosis for pots.
Worth noting that nearly each and every one of those are symptoms of/caused by being deficient in one's D & B vitamins. That also means they could all be remedied by supplementing said vitamins.
Ive already been diagnosed w fibromyalgia and chronic fatigue syndrome and im a chronic pain sufferer. I also have crohns disease and interstitial cystitis, a bladder disease, along w IIH which is Idiopathic Intercranial Hypertention. And i have severe hypertenten with my blood pressure and my heart so im on a couple of medications for that. Was diagnosed w sinus tachycardia and i have been having trouble w fluid retention lately sometimes putting on as much as 20 lbs of fluid. Started seeing a Cardiologist, he has me on 80 mg of lasix a day for that and saw a Cardiac Surgeon for my veins, I have to have a Venus Seal procedure in each leg and he told me to start wearing compression socks. I had already had my suspicions that i might have POTS, so i was hoping the socks would help. Plus i have a severe sodium deficiency. I was told by my Neurologist to increase my salt intake so i make sole water and add that to my bottle of filtered water i drink every day, plus i add salt when i cook. An ER doc checked my levels and said i wasnt doing enough and told me to double what i was doing. So i basically drink salt water all day, every day and my tests show my sodium levels hit bare minimum. I have many other symtoms too, like constant vertigo for most of my life, nausea all the time, balance issues, fainting, racing heart, anxiety issues, brain fog, memory issues, attention and focus issues. My Cardiologist said we have to get my veins fixed first then we can test for POTS so it will be more accurate but hes pretty sure it will be a positive result. But what has been helping me has been increasing my sodium levels and now wearing the compression socks. The doc wants me to wear them every day now.
Find the video on my channel called “causes of Dysautonomia.”
Pots/dysautonomia is caused by damage to the neurons mine was caused by a TBI I got as a child. I was working as a medic in 2020 and got Covid and it made my pots/dysautonomia put me on my death bed for 3-4 years… I am now very well after I figured out neurogenesis. Still have dysautonomia/pots but very well managed
I'm not diagnosed yet with POTS . I didn't know the correlation with the TBI..I have had 3 of those...
I have fibro and have developed pots on top, you’re right they’re alike but different :)
I am dealing with something that they don’t know anything about. I have seen every doctor & specialist under the sun. My problem is when I walk more than 3 minutes my heart rate increases really high & my oxygen levels drop to the 80s. When I lay down my heart rate increases as well & it causes me to shake & feel like I’m about to pass out. I get dizzy standing & it’s hard trying to breath a lot. I’m on oxygen now but all my test come back normal but I’m still not getting better. I looked up POTS & all my symptoms are pointing to that. I only get relief when I am sitting up & sometimes not even that. I’m tired of being annoyed & thinking it’s all in my head & it’s not. I been dealing with his for about a year now
Keep me updated on how things go for you. Sending prayers you get answers soon!
@@Aimee_Esther Can you tell me did you have any of my symptoms that I am having? I only feel ok sitting right up & when I stand my heart rate increases 30 points feels like I’m
About to faint
@@mrsbrittanyboyd9882 Sitting helps me a little but i do best when I am lying down. Standing makes me dizzy and I have a lot of fatigue and muscle pain
@@Aimee_Esther laying down used to help me more & they thought I had CSF bc of my headaches & laying down only helped but in December that all stopped. My shoulder blades hurts so bad & my legs & they thought it was due to low vitamin D but that wasn’t the case. Now I’m back on a heart monitor & it’s like my doctor doesn’t even want to test me for POTS
How are you now?
Thanks for this! I’m a teenager and currently wondering if I have pots, pretty much all the signs are there and I’m making a doctors appt to hopefully find out soon!❤
stay strong
@@ilovepdub thank you!! I’ve had an ekg and a couple appts and they’re thinking it’s pots or/and lqts
The only way I can get my heart rate down is to lay down
I live how uou commented about the small veins. I legit just finished seeing my dr with blood work and they coyldnt take blood cause of how small and nonexistent my veins are. Ive been monitoring my heart rate past few days and noticed my hr is low with little to no symptoms but the minute i stand up its as if the energy i just had was zapped from me, my breathis gets so horrible i got an inhaler (which barely works) and i also get the feelung like im about to faint. I told this to the dr earlier today and and they put in a referral for a cardiologist so im pretty sure im on the rivht track. I actually heard of pots from watching a service animal in action video. The owner has pots and her service animal alerts her of an episode.
Before blood work I always drink a lot of water it helps me with the bloody being able to flow easier
I’m 22 years old. One random day almost a year ago my life changed and haven’t been the same since. My heart rate is completely abnormal all of the time. High randomly but then will plummet and this pattern keeps going. I’ve been so active my whole life and now I cannot workout anywhere near the way I used to. I’m exhausted all the time, my vision is blurry, hearing is muffled, and feeling like I’m going to pass out just sitting doing nothing. Can anyone relate because I’ve been to several doctors and no one knows what I have it’s so exhausting. My stress test was normal, blood work is normal, EKGs show arrhythmias. Showers are a nightmare, school and work is impossible all I want to do is lay down and I’m becoming hopeless and depressed.
This confirms my biases that most doctors are useless.
Were your legs swelling?
I cant believe it made that much difference without significant leg swelling before.
POTS as a teacher standing all day really is awful. I also crashed on the couch every afternoon and barely moved again. Then I fainted on a student and got partially diagnosed.
Thank you for posting I am in the hospital right now having pots problems and My Dr just told me that it was food poisoning that triggered my G.I. issues
I always feel less fatigue if I begin drinking a lot of water.
I was diagnosed with pots disease and no treatment and if had dibs for most of my life and it really sucks!!
As I’m trying to figure out what’s wrong with me. It’s like everything you’re saying “same”
How do they diagnose POTS? I have a few other issues myself with my heart and I think I might have POTS. Going to try the socks.
Living with type 1 diabetes since 25; sibo, pots, gastroparesis, chronic fatigue, constipation, stomach pain, OCD since 30, screw this chronic illness stuff, acupuncture and chiropractic care are the only things that help.
2 questions have you ever gotten to the bottom of your chronic illness stuff? And how did u find out your spine was misaligned? where do you go for testing?
looking into lyme next
Going test Lyme shortly though I have Asperger's and eds
Do you have palpitation while standing up? Please reply aimme
I'm curious to know what your heart rate is after about 20 min Of standing like without the socks? i have been trying to get diagnosed with this condition for years but mine is more mild I believe or could just be inappropriate sinus tachycardia. I do the pool man's tilt test by checking my heart rate with a wrist cuff and mine is usually around 110 after just standing for a while. Like you I never pass out but have the sensation occasionally.
I just had my tilt table test and I’m so confused and feeling defeated. I had a drop in heart rate, blood pressure, and fainted. But the doctor said my test was negative. It’s been a year of testing and I have no answers. Has anyone else experienced this?
Hi am looking for compression socks
I have every detail tell tell sign of pots in still waiting on a diagnosis
I am right now trying to figure out if what I have is pots, I have shortness of breath, lightheaded, dizzy, especially standing, exhausted where I feel like all I can do is lay in bed all day likei just feel like something is wrong
I also feel crazy like where ita always diagnosed as anxiety
Sorry for spamming your comment section! I want to ask your advice for school. Last week I was at my worst and knew that I can’t do this anymore. I don’t even feel good while sitting at a desk all day. What should I do to last me throughout the year? I have perfect attendance for I think this will be my 8 year and I don’t want to lose it 😢But I probably will break my streak if I keep getting worse
Come talk to me! I have an online community and can answer all your questions in our live calls. Here's a link to try it out for a free 20 days :)
aimeeesther.podia.com/community/117796/monthly/buy
how is your sibo? any update?
What were symptoms that made you or your dr consider POTS? Did you experience rashes when outside? Did you experience nausea/vomiting because of being out in the sun?
What type of doctor diagnoses this?
When I’m lying down, my heart rate hangs around 58-65. Standing up, it’s 100-115, sometimes higher.
wow. Im so sad u are goin through that
Mine too
Sane , what did you do?
what tightness of socks do you use??
30-40mmhg
Does Pots cause GI symptoms?
Anyone out there with POTS and battling mold toxicity?
Please try B1 vitamins meth yl b vitamins. If you can find a methyl B1 that would be awesome. Your body is lacking very much in b vitamins, especially B1
Vitamin b1 benfotiamine!!!!!!
I think we die in early age, and there is No cure we can't even manage
Heya
El Sunshine you forget about Stuff
I think most of this can be tied down to diet then. " I can eat whatever I want".
Nobody can eat whatever they want. Without paying a consequence.
I've tried every diet you can imagine. From vegan to carnivore. Currently I only eat meat... Still have POTS. I'm sure diet helps some people, which is great! But others might still have issues even if they eat right. I wish that diet was the answer for me.
I am so happy that you found something that works for you but never assume that just because something works for you that it works for others. We are all on our own journey.
You let strangers take your blood, expose it to radiation, and then inject it into you multiple times for two weeks‽ WTAFWYT TSFD
F
💉 😞
massage your legs with oliver oil all over and whipped cream 😅
Misophonia...your tongue sucking while talking is bad...every teacher I had did that. 🤮
Divorce. It's your husband
It's a medical condition 🤔