I was at the cardiologist today and was explaining to the nurse the second peak. She was really curious about my hr and stuck an oximeter on my finger while I was moving from one room to another. It read 130ish at first, she reset it and a couple second later it read 65. She said it had to be an error in reading but I explained how it usually works. So a couple second later she took it again and it was 180. The look on her face was priceless
Has anyone else noticed that their EDS POTS tends to get a bit worse after eating a large meal? That tends to happen to me, possibly due to my blood pooling around the gut as my digestive system goes to work. I tend to feel better overall if I eat small amounts at a time, spread throughout the day.
Obviously a late response but YES I find this very common in my life. It helps to eat slower but I get made fun of for how slowly I eat so... give and take? But I definitely notice that as well.
This is very late question; are you all using Celtic or high mineral salt under your tongue a few times a day? EDS does not allow for proper uptake of Sodium in cells. This is key. Please do research .
Have you done or could u do a video on EDS that one could send to loved ones who don't quite understand our diagnosis?? I would appreciate something like that SO MUCH
This weekend I talked to my mom and my apple watch has noticed crazy jumps in my heartbeat. I'm in the process of getting tested for EDS and due to family history, as well as my crazy heart rate jumps I should get tested for POTS too! Thank you for this video!
I think a lot of people do get the spikes up and down from my experience. A possible cause for this is your nervous system is overcompensating as you stand and sending what is essentially spikes of adrenaline followed by a moment of over adjustment for that spike. Basically your body goes through a series of overreactions and over adjustments for those reactions, which makes it very unstable in how it affects you moment to moment.
That's what happens with me, which is why Catapres works so well at treating my POTS. It directly stops the overreaction of the sympathetic nervous system. It also stopped my migraines, anxiety, insomnia, and RLS. It's commonly prescribed off-label for all of the above.
If you have been diagnosed with HypEDS &/or Chiari, please check with your Internist or Geneticists about this drug. It may have long term neg effects on these conditions. Make sure you are using Celtic salt under the tongue a few times a day as well as neuro calming herbs in teas. This is a life long condition & being on heavy pharmaceuticals will only led to other major issues as you get older. An Internist who knew a lot about this drug but not it’s effects on Patients with EDS & Chiari , also prescribed it for me ,back in 2014. The Geneticist at Harvey Inst . suggested ; No.
Heds and pots have forced me to re-embrace one of my middle School fashion choices. Knee high socks though this time it's compression socks. They help me quite a bit.
It's very relieving to see a consistent youtuber who has POTS. You are a BIG help to us sufferers and it's very delightful to see you upload, please don't stop. God bless
I tested it this morning and I do get a second peak. If you wouldn't have mentioned this I might not have noticed or paid any attention to it. It went from 55 (lying flat on floor) to 88 (standing) down to 66 and then back up to 75. It stayed up at 75 for awhile. I had a bad reaction to what I ate yesterday for supper too...and I then realized that the symptoms I was having were very familiar. During the reaction my heart rate was 80 (sitting) and it went up to 100 at standing. You can see that's way off from my normal resting heart rate of 55!! I guess I've been dealing with pots for years and didn't know what it was. And that explains why all of my symptoms never went away by avoiding gluten & grains because it's more than just celiac / gluten sensitivity. Keep making these videos Izzy! They help a lot of people!
I’m undiagnosed but I’m going to see my doctor about pots. My heart rate does the same thing! I start out at 48-52 laying and when I stand it jumps to 114-120 then goes down a little the I get a second jump! I want to thank you for your videos because doctors never can figure out what’s wrong with me. I’m also asking about Eds when I see my doctor. Again thank you for giving me hope !
The cardiologist that I am seeing also said that craniocervical instability can play into pots symptoms as well, and since a lot of people with EDS end up with CCI, it kind of makes sense :(
Thank you so much for covering this in more detail! In reply to the question, I wasn't sure what my heart rate did, so I checked. It went from 65 lying down to 114 standing, seemed like it was trying to come down a tiny bit, and then went back up. (I didn't try for too long since I didn't want to push it.)
Sometimes I get a second spike but usually my heart rate just continues to climb. I just got my POTs diagnosis two weeks ago and I'm still learning. Thank you for your educational videos. I've had my eds diagnosis for 2 years and things keep falling into place since having my diagnosis.
I was diagnosed with an “unspecified” hyper mobility disorder and I suffer a strange form of POTS. When I stand up, sometimes I twitch in a repetitive in my left leg and arm, or need to fall or lay down if I get up too quick. My blood pressure does change but I think it was barely enough to qualify as POTS. It seems to get worse with use of marijuana and nicotine, along with sleep. Sometimes it happens without even fully standing yet, which lead some doctors to think I was having seizures
I have just recently been diagnosed with POTS after at least 5 years of symptoms. I’m currently being investigated for EDS as well and I strongly suspect that this is the case for me as well. Thanks for the info, and I think a portable option for self monitoring would be so useful. I work in healthcare and it’s shocking to me how many of my colleagues (and even my doctor) know so little about POTS! I’ve had to do so much research and advocating for myself and appreciate the resources from others like you that are experiencing the same things as me
Thank you for making these, I have an autoimmune disorder as well that isnt EDS but I am currently working on a book where the main character has it. I have a lot of friends that have it, but I worry about misrepresenting the disease. Your channel has helped alot!!
Thanks for this Izzy. A good quick refresher for me. I've been having worsening POTS-like symptoms. I've struggled to get assessed for EDS and/or POTS since learning of both conditions. I am FINALLY being refferred for a Tilt-Table test for POTS, alongside a referral for diagnosis of EDS. I'll accept if I'm wrong about either or both conditions. They're the best explanations I've found myself so far, with my limited personal expertise. The reason for referrals being that during a recent 'potential POTS episode' I was injured. After standing up quickly to get a glass of water, I walked about 20ft. Then I became dizzy, next I lost my vision, as I lost consciousness and fainted. My head struck the kitchen doorframe as I fell, resulting in a light concussion from the head injury. This event is why I am finally getting both referrals.
I don't have pots but I think I might and I get the same thing as you with he second spike so I get not so dizzy and then be ok I'm fine then I walk a bid and am suddenly hit with a much biger dizzy
I have hEDS. And tomorrow morning I’m gonna have a loop recorder implanted, they suspect POTS or IST. So this video came out at a perfect time for me. So in about 6 months I’ll probably know which one it is. As you said there’s different reasons for POTS. My arrhythmia was brushed off as my ADHD medication, (I’m 19 now, I’ve been on said medication since I was 17,) I told them my symptoms started at around 12 years old, like I remember fainting one time, dizziness and fatigue started before that. The heart doctor said it sounded like POTS or IST since it started before the medication and that my medication could actually have made it a lot worse. Which would be a massive help for me. Like it wouldn’t be as bad if I replaced my medication. I’m really happy they actually took me seriously. I thought it was completely normal to be so fatigue and dizzy until someone mentioned the link between EDS and POTS. Beta blockers have definitely helped my bpm from 90 at resting to 75 at resting, and 110 standing up instead of 130. My dizziness are still the same, but the feeling of dying every time I stand up have subsided.
Are you able to do a video on learning/coping with a chronic illness? I know you did a live stream but it’s over an hour long 😭 I personally would love a video of your like top 10 tips and how you learned to cope 💞💞
The same exact thing happens to me where when I first stand up it goes high, then starts going lower, then goes high again. I also do better when walking vs. just standing still.
Finally got a Dr who is listening to me with regards to pots lol. I've only been fainting with it since I was a 12. Now I can't stand longer than 5 mins without blotching purple hands and feet, that seriously burn with pain & itching, my blood pressure increases as well as my heartbeat. I have type one diabetes, MCAS and suspected hypermobility eds.
THANK YOU IZZY! I had to have surgery recently to have my gallbladder and appendix removed. And the IV hurt extremely badly (it always does) and more than once they had to force it back open coz the vein closed up. NOT ONE NURSE KNEW WHAT EDS WAS. Finally now I know why that happens. I'd love for you to please contact me if you would, I'd like to get into communication with you.
My Oura ring shows me going from sleep at 42-52 bpm to 120-140 bpm when I get up to pee...neurologist says it's anxiety, so I'm getting a second opinion. A neurologist years ago thought I may have EDS and since it can present alongside POTS and I've been having falling episodes, I'm having docs revisit symptoms again with a fresh set of eyes. Thanks for the video. Oura ring data is helping me present info. to my doctors.
When I do the treadmill test I get my heart rate up just a little bit but it slows down really fast but 10 minutes later it gets real crazy beats, pauses, slams and skip. Sometimes for twenty minutes or longer. They couldn’t do the scan after the treadmill until my heart rate got lower and more regular.
Omg yeah I also get the second peak which is higher than the first. I always thought my watch was broken... Also, you just made something click in my brain!! When I stand up and walk immediately, I'll usually be ok. But, if I stand up and stay still, I will black out!
Hmm I've never measured if I get a second spike or not. But I totally relate to the part where you said you start walking to calm your HR down. Same!! I HAVE to immediately start walking once I get up bc if I just stand there, I'm gonna feel really bad. Weird!
My heartrate jumps, then falls, then jumps up and down throughout the day depending on what I do. Showers are, for me, like running a couple miles for someone without POTS. My heartrate jumps up, and stays up until I'm out and sitting down for several minutes. I even have a shower chair built into my shower, but I'm still moving. I can get 10-20 minutes of "exercise" registered on my Fitbit just by taking a shower. I also have 2 separate heart conditions... mitral valve prolapse, and cardiomyopathy.
I haven't been diagnosed with POTS and am not sure I meet the qualifications, but I discovered a THING that shows this when it's warm. Might just be when I got from cold to warm, not sure. Anyway, I noticed last night that after I warmed up the house my veins in my hands were bulging. Huh. Remembering your explanation, I lifted my arm over my head. WHOOSH. Blood drains, veins go flat (so fast I can *feel* it o.o ). I lower my hands below my heart, veins bulge again. So that's a thing. Makes me wonder if it's related to Reynauld's Diagnosis can be so overrated sometimes. I can *see* my veins doing the stretchy stretchy. Not saying I shouldn't show my doc and get it on the record and other issues ruled out, but being able to see stuff like that feels validating
Mine do get up and down to. One of the researchers in that study is a wellknown "potsdoctor" in the eds/pots community here in Sweden, Artur Fedorovski. He is very good and I hope to have an appiontment with him some day. He tries different medications on his patients also to experiment what can improve life for potsies. Like adhd medication for example.
I have EXACTLY the same pattern: peak on standing up, then go down, then second peak @ 8/10 seconds much higher. Then if I walk it goes down because of blood pooling. I also believe it's kind of an adrenaline surge that produces the second peak. I can litterally feel that adrenaline surge...
I “failed” my tilt table test because my heart rate went up (over 30bpm) then down, then up again; fluctuating constantly. They said because it wasn’t sustained at the higher rate but that it went up and down a lot, it isn’t POTS 🤷🏻♀️ but they said it’s OI instead. I’m confused lol but they’re treating me anyway (Ivabradine)
my heart rate also does that! especially in the shower it just keeps climbing lol (or at least that happend over a year ago, i'm too sick to stand or shower now...)
There one thing that’s diff when I get all the blood in my feet walking doesn’t help I usually get lots of the blood in my feet when I start doing something like Walking exercising Etc.
Venous insufficiency is a problem with this condition. Thigh high compression stockings will help. MCAS, histamine intolerance and a form of an autoimmune disease are closely associated with these conditions if not causal. Think of it, if your body is always in fight or flight mode it will not be in rest and digest mode which helps you recuperate and build strong muscles and tendons.
My POTS has been hitting me so hard lately. I can't stand for more then 10 minutes with out feeling like I'm about to pass out. The highest my HR has gotten is 169 lately
Mine goes from 60s or 50s lying down to over 100 most of the time on good days. Bad days it gets up in the 140s. Mine also goes down quite a bit if i start walking. Standing still is rough. Salt stick helps some. My garmin data is crazy looking.
I also have two spikes and the second spike is higher. First one is like 110-115 and the second one is 130 and stays at that level + - 5. Also, I have MCAS and probably hEDS, but didn't diagnosed any of these syndromes / diseases. OH and it all started after an infection, which was probably covid.
Mines pretty severe but used to it over all these years. When I stand it beats so much I get dizzy and see stars, same with sitting after standing or walking to long, also happens when I wake up too, or if I get sudden stress that makes it neat quickly, like someone jumping out and saying Boo! 😃 Moringa leaf powder helps mine when I'm on it and regulates my BP Hugs and Blessings
That's the typical overactive sympathetic nervous system that often accompanies EDS. Check out the webinars by leading EDS dysautonomia researcher Dr. Alan Pocinki of George Washington University.
i fluctuate with my HR like that too with my pots. Interesting to know why! :O Mine also goes down sliiightly if I walk. but Once i stand still it goes up and up and up. -.- pots sucks. :') EDS is not a fun time either :(
I have Antiphospholipid Syndrome its a autoimmune disease, it causes thick sticky blood that clots and very thin arteries and veins, it causes dvt's, stroke, heart attacks, its scary and today I found out I have pots, I feel defective 😳
Yeah, I twitch if my blood pressure crash is severe enough, due to lack of blood to my brain. So thankful my doc gave me Catapres to prevent the BP spikes and crashes.
I'm not diagnosed..but suspecting...ive full on have flat out passed out...sometimes with stomach pain, vomiting and Vision loss ...ive bumped my head good a few times and scared friends ...😂 but does pots sufferers experience weird bathroom issues where your shaking, and need the cold floor because your overheating and experiencing stomach pain with racing heart ....oy
makes sense why standing is harder than walking for me. While standing, the blood pools in the legs and less blood in the heart and brain. Walking gets that blood moving. hmmm
My resting heart rate is 55 and when I test it in the morning by lying on the floor, when I get up it will jump up to 85 or sometimes higher. Sometimes it will go from 60 to 90 (if I've already been up and about). I'm in my 40s, almost 50 actually, so I'm getting this later in life...but then I don't know how long I've had it as I've had some of these symptoms on and off for years. I've noticed that avoiding certain foods helps me not feel so bad. I think I'm just darn lucky that I was already in very good physical condition muscle wise as I've read that strong muscles can help fight it...if fight is the proper term? Most of the time I really don't feel "sick" when my heart rate is jumping up those 30 or 33 points. I get a slight buzzy feeling in my head but that's about it. Sometimes bending over makes me feel a bit nasuea or slightly dizzy. But in my case it's more stomach problems. I have other off stuff like weird sweating, etc that I think might be related too. Like I'll be shivering when my hands are in hot water! Or my feet bottoms will sweat like crazy if I feel cold! Sleeping problems. Constipated. Burping and gas to high heaven! In my case drinking bone broth seems to help. Or I think it does anyway. I'm going to the doctor in a few days so I'll see what she says about this but I believe it's pots or some other form of dysautonomia..I'm guessing pots but I'm not a doctor. I'd have to test tomorrow morning to see if it goes up a second time or not. It's worse in the morning for me.
My heart rate just go higher and higher for minutes and then it stabilize and just stay high. (Took it right now for exemple, sitting:109bpm, standing: 139, and it stay above 130 as long as I'm standing)
I've been struggling with my POTS lately but I'm not doing good with the eating right now either. This eating issue because of stomach issues has been a frequent issue all my life. Which then of course makes the POTS worse. However, I've been taking the (SALT STICK) supplements for the last 6 months and it has made a world of difference. This time around with the eating issue my POTS isn't as bad as when I wasn't taking salt sticks. I also had my dad start taking it because he kept blacking out. I don't believe he has POTS but I just had a feeling it would help. Little did I know it didn't only help with him not blacking out and getting severally light headed it also helped him breathe better. He just kept saying, "I can breathe better than I have in 30 years." Mind you he has chronic IMPOSSIBLE to manage asthma and COPD. He was so sick we were sure he was going to die if it continued and his doctor was ZERO help. (VA DOCTOR/ MIDDLE OF THE COVID-19) 👎 Mine you many doctors at this point had already started seeing their patients in person and this was a very serious situation. He was in bad shape. I desperately searched for answers. The first thing i did was look at all his meds. He is also a diabetic and couldn't manage his diabetes at all with his meds. Come to find out one of his BP Meds was the cause of not only him not being able to manage his diabetes but also causes potassium deficiency. (Which it also stated in the medicating info that it should not be taken if you have breathing issues because this bp med causes potassium deficiency. ) A severe potassium deficiency causes breathing difficulties. He had been complaining and pleading for help for months because he couldn't breathe and nothing worked. Well potassium helps relay signals that stimulate the lungs to contract and expand and many more reasons of why the salt stick supplement helps one breathe better. So to our surprise the "SALT STICK SUPPLEMENT" didn't only help him with not blacking out and getting dizzy but worked wonders for the asthma and COPD. I talked to his doctor about the bp med and side effects and told him he needs to be taken off of it and what and why its causing so many issues. So he took him off of the bp med. PLEASE PLEASE TO EVERYONE DO NOT TRUST DOCTORS WHEN IT COMES TO MEDICATIONS. THEY DON'T KNOW ENOUGH ABOUT MEDICATIONS TO KNOW SIDE EFFECTS, INTERACTIONS AND ISSUES IT CAUSES. THE PHARMACY IS ALSO OFTEN NOT HELPFUL WITH ALL INTERACTIONS AND SIDE EFFECTS. I had at one point serotonin syndrome because the naval hospital pharmacy didn't say a word about me taking to many serotonin reuptake inhibitor medications or ones that work on that same receptor. Always look out for yourself. No one will be a better advocate for you other than yourself. Arm yourself with knowledge and understanding about your medical conditions and medications. DRUGS.COM Is very helpful with medications. It will tell you all the info about your meds that your doctor and pharmacist fail to tell you. You put all your meds on your drugs.com account and it will give you lots of helpful info. I know many of you may be familiar with this site so this is for those that don't know about it. Take care everyone ❤
Hey girl, I just tried to purchase this machine with your promo code & it says the promo code isn't valid with this device?? Your video made me really curious if I have pots. I just used an app on my phone to get my resting heart rate (76) & then took it again after standing (111) so now I'm really concerned. This would explain all my symptoms! I want this device to test & see more information. My doctors won't take me seriously or let me get these tests done! 😭
Hey! thank you so much for letting me know that! I'm going to email them now and I'll see if they can fix it and I'll get back to you! I do have a 10% off code that works (ISABELLEKORNBLA) but obviously $25 off is WAY better. I'll get back to you as soon as they respond.
In terms of the POTS thing, if you're not feeling symptomatic then I don't believe it's something to worry about, but if you ARE feeling symptomatic, then hopefully letting your docs know that standing up increased your heartrate this much, maybe they will test you for POTS. i and if you have it, there are so many meds and other things that can help :)
@@IzzyKDNA wow that is so encouraging! Yes, I have many of the symptoms. Almost every day when I stand up I get so light headed & my vision goes out for a few seconds. It's been like this since I was a kid. I also always feel weak/sick, but every test comes back negative! I've been told it's all in my head... 😭. I also have constant migraines, wondering if it could be related.
I just found your account (im in the uk) I was wondering what meds you are on for pots and other things because im so ill I can't leave the bed or sometimes talk, im 14 and I need to find meds that work for me and I can't take salt because its too big for me what do I do?
went for my first appointment with a doc, if i told you he did a poormans tilt table test i'd be lying, it was unprofessional & all over the place. he told me that all my symptoms were because i wase obese (i describe POTS & EDS symptoms) which i found frustrating because there's many other obese people around me that don't experience these symptoms at all. people that weigh more than me have a better quality of life than me. in conclusion, i was told to lose weight. he was really dismissive when my dad (also a doctor) brought up the fact that he thinks my mom & i have EDS. & why that also may be causing my POTS like symptoms. no, he didn't care about that. i'm left to go to school everyday hoping i don't get really sick suddenly so i don't have to be sent home to get a covid test. i'm banking on just faking me being healthy in school because at this point i'd have to get one every week
Is pots and vasovagal syncope the same / related? I get severe nausea when standing up made worse by heat or nicotine, feeling like I'm aboit to throwup or have to use the toilet. I sometimes faint and get really sweaty and confused as if im drunk. Doctor said ot is propably vasavagal but haven't been diagnosed. I'm hypermobile too but still waiting on dna testing.
Hi Izzy! Have you heard of Northera? Any pros or cons you could give me would be great. My cardiologist wants to get my insurance to approve that medication for me because Midodrine hasn’t been working.
I sometimes get a second spike (but I dont notice unless I am using a monitor) and it normally stays at like 130. But I also get a really high spike if I walk right after standing up (ex. sitting in my car 48 BPM 10:19 am standing up and walking to class 171 BPM 10:23 am), and then it goes back down when I sit down (ex. 63 BPM 10:33 am). Right now, with covid I've had to put timers onto my phone so that I either stand up and walk around or go lie down for a few minutes so that when I stand up after a long, online work day I don't black out. Do you guys find working out lightly helpful? When I started to do like 20 minutes of cardio every other day it really helped with the pots symptoms. Side note I also have mcas. I still dont really notice pots stuff until i am on the ground lmao cause the mcas stuff is so in my face all the time
6:17 You need to exercise your math skill and I have just the thing! I recommend using Lumosity which you can use free of charge. Here's a link to it: bertvisscher.net/lumosity
I was at the cardiologist today and was explaining to the nurse the second peak. She was really curious about my hr and stuck an oximeter on my finger while I was moving from one room to another. It read 130ish at first, she reset it and a couple second later it read 65. She said it had to be an error in reading but I explained how it usually works. So a couple second later she took it again and it was 180. The look on her face was priceless
Has anyone else noticed that their EDS POTS tends to get a bit worse after eating a large meal? That tends to happen to me, possibly due to my blood pooling around the gut as my digestive system goes to work. I tend to feel better overall if I eat small amounts at a time, spread throughout the day.
Obviously a late response but YES I find this very common in my life. It helps to eat slower but I get made fun of for how slowly I eat so... give and take? But I definitely notice that as well.
Yes this happens to me as well.
This is very late question; are you all using Celtic or high mineral salt under your tongue a few times a day? EDS does not allow for proper uptake of Sodium in cells. This is key. Please do research .
Have you done or could u do a video on EDS that one could send to loved ones who don't quite understand our diagnosis?? I would appreciate something like that SO MUCH
This weekend I talked to my mom and my apple watch has noticed crazy jumps in my heartbeat. I'm in the process of getting tested for EDS and due to family history, as well as my crazy heart rate jumps I should get tested for POTS too! Thank you for this video!
I think a lot of people do get the spikes up and down from my experience. A possible cause for this is your nervous system is overcompensating as you stand and sending what is essentially spikes of adrenaline followed by a moment of over adjustment for that spike. Basically your body goes through a series of overreactions and over adjustments for those reactions, which makes it very unstable in how it affects you moment to moment.
That's what happens with me, which is why Catapres works so well at treating my POTS. It directly stops the overreaction of the sympathetic nervous system. It also stopped my migraines, anxiety, insomnia, and RLS. It's commonly prescribed off-label for all of the above.
Same! Do you take day and night? I only take at night but now am wondering if another daytime dose would help
If you have been diagnosed with HypEDS &/or Chiari, please check with your Internist or Geneticists about this drug. It may have long term neg effects on these conditions. Make sure you are using Celtic salt under the tongue a few times a day as well as neuro calming herbs in teas. This is a life long condition & being on heavy pharmaceuticals will only led to other major issues as you get older. An Internist who knew a lot about this drug but not it’s effects on Patients
with EDS & Chiari , also prescribed it for me ,back in 2014. The Geneticist at Harvey Inst . suggested ; No.
Heds and pots have forced me to re-embrace one of my middle School fashion choices. Knee high socks though this time it's compression socks. They help me quite a bit.
Mine does the same thing... it raises again after dropping a little bit.
It's very relieving to see a consistent youtuber who has POTS. You are a BIG help to us sufferers and it's very delightful to see you upload, please don't stop.
God bless
I tested it this morning and I do get a second peak. If you wouldn't have mentioned this I might not have noticed or paid any attention to it. It went from 55 (lying flat on floor) to 88 (standing) down to 66 and then back up to 75. It stayed up at 75 for awhile. I had a bad reaction to what I ate yesterday for supper too...and I then realized that the symptoms I was having were very familiar. During the reaction my heart rate was 80 (sitting) and it went up to 100 at standing. You can see that's way off from my normal resting heart rate of 55!! I guess I've been dealing with pots for years and didn't know what it was. And that explains why all of my symptoms never went away by avoiding gluten & grains because it's more than just celiac / gluten sensitivity. Keep making these videos Izzy! They help a lot of people!
I also get the second peak. Interested in how many of us do 🤓
Sarah Girard I’m interested too!!
i think i do too!
I get a second peak. And definitely have to walk to feel my HR lower
I have the second peak as well!
I do! Not every single time but probably 80% of time at least!
I’m undiagnosed but I’m going to see my doctor about pots. My heart rate does the same thing! I start out at 48-52 laying and when I stand it jumps to 114-120 then goes down a little the I get a second jump! I want to thank you for your videos because doctors never can figure out what’s wrong with me. I’m also asking about Eds when I see my doctor. Again thank you for giving me hope !
The cardiologist that I am seeing also said that craniocervical instability can play into pots symptoms as well, and since a lot of people with EDS end up with CCI, it kind of makes sense :(
Thank you so much for covering this in more detail! In reply to the question, I wasn't sure what my heart rate did, so I checked. It went from 65 lying down to 114 standing, seemed like it was trying to come down a tiny bit, and then went back up. (I didn't try for too long since I didn't want to push it.)
Sometimes I get a second spike but usually my heart rate just continues to climb. I just got my POTs diagnosis two weeks ago and I'm still learning. Thank you for your educational videos. I've had my eds diagnosis for 2 years and things keep falling into place since having my diagnosis.
I was diagnosed with an “unspecified” hyper mobility disorder and I suffer a strange form of POTS. When I stand up, sometimes I twitch in a repetitive in my left leg and arm, or need to fall or lay down if I get up too quick. My blood pressure does change but I think it was barely enough to qualify as POTS. It seems to get worse with use of marijuana and nicotine, along with sleep. Sometimes it happens without even fully standing yet, which lead some doctors to think I was having seizures
Congrats on your sponsorship! Congratulations 🎉
Great vid. Good job!
I think I may buy this! You did a really good job 👏🏻
I have just recently been diagnosed with POTS after at least 5 years of symptoms. I’m currently being investigated for EDS as well and I strongly suspect that this is the case for me as well. Thanks for the info, and I think a portable option for self monitoring would be so useful. I work in healthcare and it’s shocking to me how many of my colleagues (and even my doctor) know so little about POTS! I’ve had to do so much research and advocating for myself and appreciate the resources from others like you that are experiencing the same things as me
You explain every thing so well, thanks so much for posting.
Thank you for making these, I have an autoimmune disorder as well that isnt EDS but I am currently working on a book where the main character has it. I have a lot of friends that have it, but I worry about misrepresenting the disease. Your channel has helped alot!!
Thanks for this Izzy. A good quick refresher for me. I've been having worsening POTS-like symptoms. I've struggled to get assessed for EDS and/or POTS since learning of both conditions. I am FINALLY being refferred for a Tilt-Table test for POTS, alongside a referral for diagnosis of EDS. I'll accept if I'm wrong about either or both conditions. They're the best explanations I've found myself so far, with my limited personal expertise. The reason for referrals being that during a recent 'potential POTS episode' I was injured. After standing up quickly to get a glass of water, I walked about 20ft. Then I became dizzy, next I lost my vision, as I lost consciousness and fainted. My head struck the kitchen doorframe as I fell, resulting in a light concussion from the head injury. This event is why I am finally getting both referrals.
I don't have pots but I think I might and I get the same thing as you with he second spike so I get not so dizzy and then be ok I'm fine then I walk a bid and am suddenly hit with a much biger dizzy
Shira Weir so has u
just got diagnosed with both. never thought id actually have answers
Yes I also have EDS and POTS so this was really interesting thank you! Gonna look at getting the ekg monitor too thank you! 💖
I completely understand this feeling.
I have hEDS. And tomorrow morning I’m gonna have a loop recorder implanted, they suspect POTS or IST. So this video came out at a perfect time for me.
So in about 6 months I’ll probably know which one it is.
As you said there’s different reasons for POTS.
My arrhythmia was brushed off as my ADHD medication, (I’m 19 now, I’ve been on said medication since I was 17,) I told them my symptoms started at around 12 years old, like I remember fainting one time, dizziness and fatigue started before that.
The heart doctor said it sounded like POTS or IST since it started before the medication and that my medication could actually have made it a lot worse. Which would be a massive help for me. Like it wouldn’t be as bad if I replaced my medication.
I’m really happy they actually took me seriously. I thought it was completely normal to be so fatigue and dizzy until someone mentioned the link between EDS and POTS.
Beta blockers have definitely helped my bpm from 90 at resting to 75 at resting, and 110 standing up instead of 130. My dizziness are still the same, but the feeling of dying every time I stand up have subsided.
Are you able to do a video on learning/coping with a chronic illness? I know you did a live stream but it’s over an hour long 😭 I personally would love a video of your like top 10 tips and how you learned to cope 💞💞
The same exact thing happens to me where when I first stand up it goes high, then starts going lower, then goes high again. I also do better when walking vs. just standing still.
I knew a lot of this already, but I watched it all anyway to see my best friend! 👋🏽 And you did great at explaining all of it!
Finally got a Dr who is listening to me with regards to pots lol. I've only been fainting with it since I was a 12. Now I can't stand longer than 5 mins without blotching purple hands and feet, that seriously burn with pain & itching, my blood pressure increases as well as my heartbeat. I have type one diabetes, MCAS and suspected hypermobility eds.
THANK YOU IZZY! I had to have surgery recently to have my gallbladder and appendix removed. And the IV hurt extremely badly (it always does) and more than once they had to force it back open coz the vein closed up. NOT ONE NURSE KNEW WHAT EDS WAS. Finally now I know why that happens. I'd love for you to please contact me if you would, I'd like to get into communication with you.
My Oura ring shows me going from sleep at 42-52 bpm to 120-140 bpm when I get up to pee...neurologist says it's anxiety, so I'm getting a second opinion. A neurologist years ago thought I may have EDS and since it can present alongside POTS and I've been having falling episodes, I'm having docs revisit symptoms again with a fresh set of eyes. Thanks for the video. Oura ring data is helping me present info. to my doctors.
I wanted to share that Small fiber neuropathy, SIBO, and MALS cause POTS. Those with EDS have predisposition to all these conditions as well.
When I do the treadmill test I get my heart rate up just a little bit but it slows down really fast but 10 minutes later it gets real crazy beats, pauses, slams and skip. Sometimes for twenty minutes or longer. They couldn’t do the scan after the treadmill until my heart rate got lower and more regular.
Omg yeah I also get the second peak which is higher than the first. I always thought my watch was broken... Also, you just made something click in my brain!! When I stand up and walk immediately, I'll usually be ok. But, if I stand up and stay still, I will black out!
Hmm I've never measured if I get a second spike or not. But I totally relate to the part where you said you start walking to calm your HR down. Same!! I HAVE to immediately start walking once I get up bc if I just stand there, I'm gonna feel really bad. Weird!
My heartrate jumps, then falls, then jumps up and down throughout the day depending on what I do. Showers are, for me, like running a couple miles for someone without POTS. My heartrate jumps up, and stays up until I'm out and sitting down for several minutes. I even have a shower chair built into my shower, but I'm still moving. I can get 10-20 minutes of "exercise" registered on my Fitbit just by taking a shower. I also have 2 separate heart conditions... mitral valve prolapse, and cardiomyopathy.
I haven't been diagnosed with POTS and am not sure I meet the qualifications, but I discovered a THING that shows this when it's warm. Might just be when I got from cold to warm, not sure. Anyway, I noticed last night that after I warmed up the house my veins in my hands were bulging. Huh. Remembering your explanation, I lifted my arm over my head. WHOOSH. Blood drains, veins go flat (so fast I can *feel* it o.o ). I lower my hands below my heart, veins bulge again. So that's a thing. Makes me wonder if it's related to Reynauld's
Diagnosis can be so overrated sometimes. I can *see* my veins doing the stretchy stretchy. Not saying I shouldn't show my doc and get it on the record and other issues ruled out, but being able to see stuff like that feels validating
Mine do get up and down to. One of the researchers in that study is a wellknown "potsdoctor" in the eds/pots community here in Sweden, Artur Fedorovski. He is very good and I hope to have an appiontment with him some day. He tries different medications on his patients also to experiment what can improve life for potsies. Like adhd medication for example.
Thank you so much for all your informative videos! I learn more from you than all my many doctors. God bless you!
I have EXACTLY the same pattern: peak on standing up, then go down, then second peak @ 8/10 seconds much higher. Then if I walk it goes down because of blood pooling. I also believe it's kind of an adrenaline surge that produces the second peak. I can litterally feel that adrenaline surge...
I “failed” my tilt table test because my heart rate went up (over 30bpm) then down, then up again; fluctuating constantly. They said because it wasn’t sustained at the higher rate but that it went up and down a lot, it isn’t POTS 🤷🏻♀️ but they said it’s OI instead. I’m confused lol but they’re treating me anyway (Ivabradine)
You have helped me so much. I wanted to thank you.
my heart rate also does that! especially in the shower it just keeps climbing lol (or at least that happend over a year ago, i'm too sick to stand or shower now...)
There one thing that’s diff when I get all the blood in my feet walking doesn’t help I usually get lots of the blood in my feet when I start doing something like Walking exercising Etc.
Venous insufficiency is a problem with this condition. Thigh high compression stockings will help. MCAS, histamine intolerance and a form of an autoimmune disease are closely associated with these conditions if not causal. Think of it, if your body is always in fight or flight mode it will not be in rest and digest mode which helps you recuperate and build strong muscles and tendons.
I have been told that i have pot which been cause by my fibromyalgia and stomach issues
Hi with EDS do you have cpsine misalignment, just curious.
My POTS has been hitting me so hard lately. I can't stand for more then 10 minutes with out feeling like I'm about to pass out. The highest my HR has gotten is 169 lately
Mine goes from 60s or 50s lying down to over 100 most of the time on good days. Bad days it gets up in the 140s. Mine also goes down quite a bit if i start walking. Standing still is rough. Salt stick helps some. My garmin data is crazy looking.
Does your insurance or doctor cover that EKG and blood pressure machine? Or where can we get them?
I also have two spikes and the second spike is higher. First one is like 110-115 and the second one is 130 and stays at that level + - 5. Also, I have MCAS and probably hEDS, but didn't diagnosed any of these syndromes / diseases. OH and it all started after an infection, which was probably covid.
Hi I suffer terrible with POTS syndrome it's awful. Thoughts and blessings to you
Yes, I get spikes, too and it's better when I walk.
So all these spikes in adrenaline probably makes my anxiety worse. No wonder I'm constantly battling anxiety.
Mines pretty severe but used to it over all these years. When I stand it beats so much I get dizzy and see stars, same with sitting after standing or walking to long, also happens when I wake up too, or if I get sudden stress that makes it neat quickly, like someone jumping out and saying Boo! 😃
Moringa leaf powder helps mine when I'm on it and regulates my BP
Hugs and Blessings
That's the typical overactive sympathetic nervous system that often accompanies EDS. Check out the webinars by leading EDS dysautonomia researcher Dr. Alan Pocinki of George Washington University.
i fluctuate with my HR like that too with my pots. Interesting to know why! :O Mine also goes down sliiightly if I walk. but Once i stand still it goes up and up and up. -.- pots sucks. :') EDS is not a fun time either :(
Hey Izzy! Are you still going to do a video on HSD from when you attended the conference? :)
I have Antiphospholipid Syndrome its a autoimmune disease, it causes thick sticky blood that clots and very thin arteries and veins, it causes dvt's, stroke, heart attacks, its scary and today I found out I have pots, I feel defective 😳
Does anyone else look like they are having a mild seizure? Not every time just when it’s reallllyy bad
First time a fainted, my boyfriend tought I was having a seizure! My doctor said its just due to decresed ammount of oxygen to the brain.
Yeah, I twitch if my blood pressure crash is severe enough, due to lack of blood to my brain. So thankful my doc gave me Catapres to prevent the BP spikes and crashes.
I'm not diagnosed..but suspecting...ive full on have flat out passed out...sometimes with stomach pain, vomiting and Vision loss ...ive bumped my head good a few times and scared friends ...😂 but does pots sufferers experience weird bathroom issues where your shaking, and need the cold floor because your overheating and experiencing stomach pain with racing heart ....oy
makes sense why standing is harder than walking for me. While standing, the blood pools in the legs and less blood in the heart and brain. Walking gets that blood moving. hmmm
I only get one jump. But most of the time it's only when I'm ill too. Allergies can count. It's very very bad when I'm ill. Immune system sparked?
I wonder why some of us have a high resting heart rate too. My resting heart rate is 120.
My resting heart rate is 55 and when I test it in the morning by lying on the floor, when I get up it will jump up to 85 or sometimes higher. Sometimes it will go from 60 to 90 (if I've already been up and about). I'm in my 40s, almost 50 actually, so I'm getting this later in life...but then I don't know how long I've had it as I've had some of these symptoms on and off for years. I've noticed that avoiding certain foods helps me not feel so bad. I think I'm just darn lucky that I was already in very good physical condition muscle wise as I've read that strong muscles can help fight it...if fight is the proper term? Most of the time I really don't feel "sick" when my heart rate is jumping up those 30 or 33 points. I get a slight buzzy feeling in my head but that's about it. Sometimes bending over makes me feel a bit nasuea or slightly dizzy. But in my case it's more stomach problems. I have other off stuff like weird sweating, etc that I think might be related too. Like I'll be shivering when my hands are in hot water! Or my feet bottoms will sweat like crazy if I feel cold! Sleeping problems. Constipated. Burping and gas to high heaven! In my case drinking bone broth seems to help. Or I think it does anyway. I'm going to the doctor in a few days so I'll see what she says about this but I believe it's pots or some other form of dysautonomia..I'm guessing pots but I'm not a doctor. I'd have to test tomorrow morning to see if it goes up a second time or not. It's worse in the morning for me.
My heart rate just go higher and higher for minutes and then it stabilize and just stay high. (Took it right now for exemple, sitting:109bpm, standing: 139, and it stay above 130 as long as I'm standing)
Thank you so much for the blood pressure monitor recommendations my dad has dextracardia and find a good blood pressure monitor is VITAL
Mine jumps to like 120 then up to 155 ish.
connection between mold/CIRS and POTS?
I've been struggling with my POTS lately but I'm not doing good with the eating right now either. This eating issue because of stomach issues has been a frequent issue all my life. Which then of course makes the POTS worse. However, I've been taking the (SALT STICK) supplements for the last 6 months and it has made a world of difference. This time around with the eating issue my POTS isn't as bad as when I wasn't taking salt sticks. I also had my dad start taking it because he kept blacking out.
I don't believe he has POTS but I just had a feeling it would help. Little did I know it didn't only help with him not blacking out and getting severally light headed it also helped him breathe better. He just kept saying, "I can breathe better than I have in 30 years." Mind you he has chronic IMPOSSIBLE to manage asthma and COPD. He was so sick we were sure he was going to die if it continued and his doctor was ZERO help. (VA DOCTOR/ MIDDLE OF THE COVID-19) 👎
Mine you many doctors at this point had already started seeing their patients in person and this was a very serious situation. He was in bad shape.
I desperately searched for answers.
The first thing i did was look at all his meds. He is also a diabetic and couldn't manage his diabetes at all with his meds. Come to find out one of his BP Meds was the cause of not only him not being able to manage his diabetes but also causes potassium deficiency. (Which it also stated in the medicating info that it should not be taken if you have breathing issues because this bp med causes potassium deficiency. )
A severe potassium deficiency causes breathing difficulties. He had been complaining and pleading for help for months because he couldn't breathe and nothing worked. Well potassium helps relay signals that stimulate the lungs to contract and expand and many more reasons of why the salt stick supplement helps one breathe better. So to our surprise the "SALT STICK SUPPLEMENT" didn't only help him with not blacking out and getting dizzy but worked wonders for the asthma and COPD. I talked to his doctor about the bp med and side effects and told him he needs to be taken off of it and what and why its causing so many issues. So he took him off of the bp med. PLEASE PLEASE TO EVERYONE DO NOT TRUST DOCTORS WHEN IT COMES TO MEDICATIONS. THEY DON'T KNOW ENOUGH ABOUT MEDICATIONS TO KNOW SIDE EFFECTS, INTERACTIONS AND ISSUES IT CAUSES.
THE PHARMACY IS ALSO OFTEN NOT HELPFUL WITH ALL INTERACTIONS AND SIDE EFFECTS. I had at one point serotonin syndrome because the naval hospital pharmacy didn't say a word about me taking to many serotonin reuptake inhibitor medications or ones that work on that same receptor. Always look out for yourself. No one will be a better advocate for you other than yourself. Arm yourself with knowledge and understanding about your medical conditions and medications. DRUGS.COM Is very helpful with medications. It will tell you all the info about your meds that your doctor and pharmacist fail to tell you. You put all your meds on your drugs.com account and it will give you lots of helpful info.
I know many of you may be familiar with this site so this is for those that don't know about it. Take care everyone ❤
Hey girl, I just tried to purchase this machine with your promo code & it says the promo code isn't valid with this device??
Your video made me really curious if I have pots. I just used an app on my phone to get my resting heart rate (76) & then took it again after standing (111) so now I'm really concerned. This would explain all my symptoms! I want this device to test & see more information. My doctors won't take me seriously or let me get these tests done! 😭
Hey! thank you so much for letting me know that! I'm going to email them now and I'll see if they can fix it and I'll get back to you! I do have a 10% off code that works (ISABELLEKORNBLA) but obviously $25 off is WAY better. I'll get back to you as soon as they respond.
In terms of the POTS thing, if you're not feeling symptomatic then I don't believe it's something to worry about, but if you ARE feeling symptomatic, then hopefully letting your docs know that standing up increased your heartrate this much, maybe they will test you for POTS. i and if you have it, there are so many meds and other things that can help :)
@@IzzyKDNA wow that is so encouraging! Yes, I have many of the symptoms. Almost every day when I stand up I get so light headed & my vision goes out for a few seconds. It's been like this since I was a kid. I also always feel weak/sick, but every test comes back negative! I've been told it's all in my head... 😭. I also have constant migraines, wondering if it could be related.
Hey izzy i miss you !!💓💓💓💓💓💓💓
I just found your account (im in the uk) I was wondering what meds you are on for pots and other things because im so ill I can't leave the bed or sometimes talk, im 14 and I need to find meds that work for me and I can't take salt because its too big for me what do I do?
Thank you so much for sharing.
went for my first appointment with a doc, if i told you he did a poormans tilt table test i'd be lying, it was unprofessional & all over the place. he told me that all my symptoms were because i wase obese (i describe POTS & EDS symptoms) which i found frustrating because there's many other obese people around me that don't experience these symptoms at all. people that weigh more than me have a better quality of life than me. in conclusion, i was told to lose weight. he was really dismissive when my dad (also a doctor) brought up the fact that he thinks my mom & i have EDS. & why that also may be causing my POTS like symptoms. no, he didn't care about that. i'm left to go to school everyday hoping i don't get really sick suddenly so i don't have to be sent home to get a covid test. i'm banking on just faking me being healthy in school because at this point i'd have to get one every week
im so sorry that your doctor dismissed your symptoms like that and tried to tell you it was normal. I'm sure that was very discouraging.
Does anybody knows if EDS causes the cartilage of the nose to separate? I notice you have the same line in the center of the nose as me
I’m in the process of getting a diagnosis, and I have one.
Omg I have it too
Are you taking any beta blockers and do they wotk for you?
Is pots and vasovagal syncope the same / related? I get severe nausea when standing up made worse by heat or nicotine, feeling like I'm aboit to throwup or have to use the toilet. I sometimes faint and get really sweaty and confused as if im drunk. Doctor said ot is propably vasavagal but haven't been diagnosed. I'm hypermobile too but still waiting on dna testing.
Hi Izzy! Have you heard of Northera? Any pros or cons you could give me would be great. My cardiologist wants to get my insurance to approve that medication for me because Midodrine hasn’t been working.
no i haven't hear of it! Sorry! :)
Can it's cureble ? Or have to lifetime live with pots! My standing puls is 140 145
Thank you! Your content is so helpful
I'm so happy to hear that!
This was fascinating Izzy, thank you!
G8mar Chasimah Tovah xxxxxxxxxxxx
I sometimes get a second spike (but I dont notice unless I am using a monitor) and it normally stays at like 130. But I also get a really high spike if I walk right after standing up (ex. sitting in my car 48 BPM 10:19 am standing up and walking to class 171 BPM 10:23 am), and then it goes back down when I sit down (ex. 63 BPM 10:33 am). Right now, with covid I've had to put timers onto my phone so that I either stand up and walk around or go lie down for a few minutes so that when I stand up after a long, online work day I don't black out.
Do you guys find working out lightly helpful? When I started to do like 20 minutes of cardio every other day it really helped with the pots symptoms.
Side note I also have mcas. I still dont really notice pots stuff until i am on the ground lmao cause the mcas stuff is so in my face all the time
6:17 You need to exercise your math skill and I have just the thing! I recommend using Lumosity which you can use free of charge. Here's a link to it: bertvisscher.net/lumosity
She is incorrect people get pots in Eds from cervical instability. You can treat with a neck brace prolotherapy or surgery
love your videos,i also have pots and hypotension,,heds,gp &bladder issues & more comorbordities,i follow you on instagrsm,love your posts
Notice me Senpai. Jk love your videos xoxoxoxo!