Mayo Clinic pediatric and adolescent physician Philip Fischer, M.D., introduces a patient diagnosed with postural tachycardia syndrome, more commonly known as POTS. To learn more about POTS or to request and appointment, visit http://www.mayoclinic.org/departments-centers/cardiovascular-diseases/overview/specialty-groups/heart-rhythm-clinic/overview?mc_id=global&utm_source=youtube&utm_medium=sm&utm_content=dysrhythmiaheart&utm_campaign=mayoclinic&geo=global&placementsite=enterprise&cauid=103944
POTS is a rapid increase in heart rate that occurs when you stand. POTS is most common in girls between the age of 12 and 20. Symptoms include dizziness or passing out when rising from a seated position, fatigue, and nausea. POTS can sometimes be treated with the use of medications, but symptoms can also be reduced with diet and exercise.
Beta blockers lowered my bp even more. Made me feel horrendous and midon made me itch all over, kept me awake at night and made me feel suicidal. So where am I now with POTs? Barely surviving. I’m in hell.
Hi, If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 800-446-2279, Florida: 904-953-0853, Minnesota: 507-538-3270) or request an appointment online: https://mayocl.in/2Dt1BdQ.
We strongly urge you to seek professional help. Please call 1-800-273-8255 which is the National Suicide Prevention Lifeline.
If you have chronic fatigue syndrome aka myalgic encephalomyelitis along with pots DO NOT EXERCISE!!! Unless you see a doctor with experience in CFS/ME & they give you the ok.
Exercise can have very negative consequences for people with cfs/me in the short & long term. Unfortunately, most doctors don't have much education on this fact yet. 😕
I just got out of hospital while i was there when ever i got up i got extremly dizzy i would walk to bathroom and i was very dizzy feeling like passing out i could here my heart pounding in my troat and shortness of breath it kinda felt like a asthma attack every time i would get up and stand my pulse was going to140 to 150 none of the doctors no what it was do u think this is pots i still have the symtoms thanks for the video
University of Oklahoma and Vanderbilt University researchers discovered the presence of autoantibodies that block certain receptors on nerve cells of people with dysautonomia in a study conducted in 2014.
Mesenchymal stem-cell (MSC) therapy utilizes medical technology that allows the extraction of stem cells from a patient’s body fat. MSC therapy has been successfully used to treat patients who suffer from dysautonomia by managing known autoimmune factors and inhibiting the inflammatory cells in the central nervous system called microglia. One theory suggests that the anti-inflammatory properties of MSC therapy may be what help to inhibit the autoantibodies so that nerve cell receptors function better.
I had mono when I was 13 and never got well again. I am now 47 and was finally diagnosed with POTS last month. I have been called everything from lazy to crazy, with one doctor saying all doctors should be warned about me so they only treat me psychiatrically instead of medically. I started with a new family doctor right after that and he said, “yeah, we could do that. Or we could treat you for what I think is wrong with you. Which would you like?” It still took time, but eventually I ended up with a POTS diagnosis. After 30+ years, it is such a relief to finally give it a name!
I've been experiencing some weird and uncomfortable symptoms ( anxiety, fast heart rate, exhaustionn, blood pooling, patchy legs when standing for 10-15 minutes and pvcs) since the past 4 years now. I've had a series of tests done in different hospitals and every single time I'm told that's it's " nothing" and it's just anxiety. It's gotten to the point where I am experiencing a couple pvcs ( skipped heartbeats) every single day and the doctors don't even bat an eye because all my heart tests came out to be just fine.
I know my body and what I am feeling and I KNOW it's not anxiety... in FACT these symptoms cause me anxiety. I've had many people tell me that I might have pots.
Does anyone relate?
HI Tiffany, If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 800-446-2279, Florida: 904-953-0853, Minnesota: 507-538-3270) or request an appointment online: https://mayocl.in/2tS3oC2.
I just watched Dr. John Bergman's video on postural tachycardia syndrome, which makes so much sense and explains what causes it. He said beta blockers can cause POTS. Dr. B has 8-9 yrs of teaching anatomy and physiology and 25 yrs as a chiropractor. He's so sought after that it takes close to a year to get into his clinic in Huntington Beach.
My son has episodes of this - he has mild autism. What I want to know is the cause. Our bodies are not craving meds. He doesn't get headaches or dizziness. POTS is typical of lots of people on the autism spectrum. I heard they live to be about 50 (not sure how true that is or I just don't want to believe it). It's good to know that sodium and exercise may help - thanks for that good info!
Hey i was told i got pots 10 years ago but then it when away but sadly it has return after exacly 10 years .i dont have most of the syndrome that others do. All i have is fast hear rate but also there are times that i don’t have heart rate. I can stand normally and walk normally but i do get tired when i go up the stairs. Is it really pots that i have ?
Hi Madison, If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 800-446-2279, Florida: 904-953-0853, Minnesota: 507-538-3270) or request an appointment online: http://mayocl.in/2nCjnB7.
So there's a chance I have POTS and I've yet to be tested but is it possible to have POTS without standing up and fully fainting? I'm usually dizzy upon standing after laying down but I've never fully passed out
My doctors say the exact opposite of all of this and have blamed me for everything. I've been rude to back to back to back by so many doctors it's not even funny. I've been dismissed over and over and over and over. Several doctors have told me I'm faking to get attention, some have told me that only children get it. Some tell me it's anxiety, and that it's all in my head, and that I just need to get over myself. They're not willing to try anything at all. They just tell me to drink lots of water and intake salt. I do and I'm still suffering. I can't intake salt anymore because I also have IBS. I cannot take beta blockers because of extremely low blood pressure. Now, they will not help me.
It took me 3 years to get the right diagnostic and it was a mental warfare since all the doctors I visited told me I was physically fine and that it had to do with mental illness. Finally I got the correct diagnostic (coincidentally at the Mayo clinic). However, they gave me a medication called Midodrine which lead me to a manic episode, and then another one called Mestinon which lowered my heart rate to 40 bpm. I’m not saying that taking medications for this syndrome is wrong, if your body needs it that’s fine, just be careful. I have avoided medications ever since and worked on exercising, drinking electrolytes, a dramatical change in diet, I stopped drinking, and there are some other tips like tilting your bed or using pressure socks which I consider to be less important. Today I don’t feel 100% but I’m getting there. I’m finally taking a full academic course load after years, and can deal with everyday life. The intention of this message is for people who feel like they have no way out, because I felt like that for years, and I can tell you things do get better eventually.
Enrique Gonzalez midodrine fucked me up...made me 150 upon stabding over 111 over 130 horrid horid drug..ugh i try fludrocortisone and compressiona nd salt sticks but still loopy.even biofeedbackk is temp
I got diagnosed with PoTS not long after I was diagnosed with EDS Hypermobility. I been given beta blockers but had to stop because it set my Asthma of. But now have been given a few different Calcium Channel Blockers to try but they seem to not work either. I've found that as my EDS gets worse so is my POTS. I've been told that coz you can't cure EDS and that's the illness that's given me POTS that won't ever be cured either. Is this true and if not is there anything else I can try?
Skyla, below is a response from Dr. Fischer:
Thanks for the comment, but I am very sorry to hear of your two recent diagnoses. However, you are not alone.
Lots of people have both hypermobility (whether actually one of the diagnosable forms of Ehlers Danlos syndrome or not) and POTS. It seems that people with stretchier-than-average soft tissues (skin, tendons, ligaments) also have looser-than-usual structures supporting their blood vessels. Thus, they are more likely to suffer the effects of floppy blood vessels (pooling of blood in the legs when upright, compensatory excessive increase in heart rate as the body tries to hyper-circulate the blood that isn’t puddled in the legs), dizziness, and fatigue.
While hypermobility continues as a characteristic of the body, physical therapy can help tighten loose joints. This can help reduce pain and can help facilitate an exercise program.
And, with or without hypermobility, most patients with POTS improve lots or even recover. We evaluated a bunch of our adult and adolescent POTS patients a year after their initial POTS diagnosis, and nearly a third had already fully recovered from their POTS. Surveying adolescents 2-10 years after we diagnosed them with POTS, 86% were recovered or, at least, functioning significantly better than before.
So, I would stay optimistic! Ehlers Danlos hypermobility can be helpfully managed, and POTS can indeed resolve (and often does).
Many of my patients find beta blockers helpful, even if they have mild asthma. But, as you well know, beta blockers can aggravate asthma, so not every POTS patient can safely use a beta blocker. Your physicians can likely find other medication to help (maybe midodrine). Of course, increasing blood volume (with LOTS of fluid and salt intake), strengthening muscles and building vascular fitness (by doing daily aerobic exercise), and mobilizing the mind to help the body behave better (cognitive behavioral therapy) often do even more to help patients cope with and conquer POTD than do beta blockers.
I hope you find good success as you head down a road to improved health (and, potentially, recovery)!
Can anyone help me !! I'm a 14 year old female and I'm pretty certain I have pots ... I had some kind of a fit before and also had a absence seizure ( I no this because my cousin who has epilepsy told me I had one ) upon standing up every time I stand up I can literally hear my heart beating In my head I also get so dizzy that most of the time I have to hold on to something I also rly shortness of breath and random body pain I train 4 times a week for 2-3 hours a day and I find it particularly hard sometimes because if I'm doing any exercise that involves sitting down than getting back up I get dizzy and even just after doing sprints can anyone please help me !!
I'm 14 and I'm not sure if I have it every time I stand up I get really dizzy and is hard to see and sometimes also hard to breath I've had a fit before and I also fainted before and I also get random body pain and sometimes my heart beats so fast I can hear it ... can some one help me ??
You don't mention what causes pots. For example Lyme disease. I watched your video years ago but you overlooked to tell patients that they could have autonomic neuropathy because they have central nervous system infection (Lyme) please be sure to scream all your patients for Lyme disease. And particularly kindly ask them if they travelled to farms or had any circular rushes. Hope that helps with your clinic.
I went to Mayo in 2000. I was diagnosed with P.O.T.S. I took Beta Blockers, and still do, tried everything you prescribed. I see a cardiologist daily. I've been to 14 specialists. It's 16 years later, and I'm 3 years into the worst POTS flare of my life. I don't think all cases of POTS are curable. You can treat symptoms but not cure it completely unless it's a teenage case perhaps or a minor case in my eyes. I can't function. I cant stand for more than ten minutes without blacking out or passing out. I have broken several bones and have had several concussions. My blood pressure sky rockets and my blood pressure drops. I have tried in to excercise the few times i feel okay but the I keel over or have a POTS attack. I feel stuck. i know i need to excersise but if I cant stand or even stay upright on an excersise bike how can i do that without injury? I cannot afford to go to Mayo again. I haven't worked since 2013. I was a Lisensed Funeral Director and passed out twice on the job at very awkward times and broke bones one of them. This has ruined my life as well as 4 other diseases that have showed up since. I hope soon a cure can be found. I just want my life back.
This video really gave me hope that better days lie ahead with my pots diagnosis. I was 15 when these symptoms arose. Doctors thought I was just suffering from anxiety and should see a therapist. These symptoms CAUSE ANXIETY. Going through high school was extremely tough, I missed many days of school but thankfully graduated with honors. It seems as though my symptoms go through cycles, some months my symptoms are manageable, I can drive to my college which is about 45 minutes away from home and manage to exercise. I'm 20 now and my symptoms have gotten worse in the past few months and it just makes me really sad. These symptoms have really taken a toll on my life and I would do anything to go back to the way I was before this happened.
I was finally diagnosed with POTS this past January, and my doctor has helped in some ways, but he definitely doesn't specialize in POTS.
Thank you for this video, I'm entering my junior year of college and would love to be able to get these symptoms under control before I enter the "real world."
I take one day at a time and remain positive that hopefully this too shall pass.
I have but been tested for pots, but I do have an the same symptoms. I'm seeing a cardiologist and GP . not sure I have this but have been put on beta blockers and is helping my sinus tachycardia a significant amount. they have also reduced my anxiety, no longer having panic attacks. I know I'm not crazy about feeling the way I do. I ruled out things that I have and this is the only thing I can think of.
What is the differece beteeen Pots and CFS /ME? How do You diagnose? Betablockers is no longer recomended for Cfs/ME. But recomended for Pots. Most people suffering from CFS/Me also have pots. How do I know what is what? Thank You for your reply.
Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 800-446-2279 Florida: 904-953-0853 Minnesota: 507-538-3270). If you would like to connect with an online community where you can share your experiences, find support from people like you, and receive trustworthy information from Mayo Clinic experts, visit: http://connect.mayoclinic.org/.
I have a 13 year old daughter that has all of the symptoms of POTS and has been to numerous specialists. We have been told that they think she has an autonomic nervous system disorder, but she hasn't received a formal diagnosis and no one seems to know how to treat her. She has progressively gotten worse in the last year and a half. How do we make an appointment at Mayo to have her evaluated?
Thanks to mayo clinic I got diagnosed years ago after many many test! Was diagnosed by tilt table test
I'm on metoprolol and live a happy life. I still have some exercise intolerance and anxiety.
My heart goes out to the younger adults who get thrown antidepressants and getting told it's all in their heads like I had been told for many years.
My question is what can I do to have better drive for exercise without getting lightheaded and I am very heat intolerant.
dolphinsplash I'm surprised I don't have high blood pressure since it runs in my family and I'm a salt addict. Every time I get my blood pressure checked its always on the lower side of normal which always has me thinking how can that be with the amount of salt I consume
Try for coconut water as an electrolyte. Make sure it's 100% pure coconut water check ingredients of it has anything else don't buy it. If Aldi is near you they have it at a decent price or you can try your local wholesale club like Sam's club may have a good price too. Thank for helping me.
It's definitely worth ruling it out. A Tilt Table Test done in an Autonomic Lab which at my hospital was part of the Neurology wing; if possible is where I had my testing done. They put heart monitors on you as well, so they are able to rule out heart arrhythmias as well that may be the culprit for symptoms. You may want to start with more water consumption and salt intake and see if that helps...I'm not a doctor, but that is what they start with when they are treating POTS. Then they move onto beta blockers, and things like Midodrine and Florinef to help your body hold the right balance of salt and water. Electrolytes like Gatorade can help too. I've been giving the generic of Pedialyte a try recently. Definitely a cheaper option then heading straight for the specialty testing. Good luck!!
I wonder if I have this. I've had seizures from standing up too fast especially if I have a migraine at the time. That doesn't happen anymore. What happens sometimes is I stand up too quickly and my heart start beating really fast I start sweating and get light headed and sometimes see stars/blinking dark or light and then I start to feel like I'm falling over. I've got to hold on to the wall so I don't fall over. This can last several minutes even after I sit down. With the fast heartbeat comes the shortness of breath which I fight either by slowing down my breathing or holding my breath. I know if I breath too fast I might pass out or have a seizure. I know TMI unfortunately I can't afford to go to the Dr right now. I hope whatever it is won't be as disruptive to my life as seizures have.
I became lightheaded while working, I went to the Er ad they said my heart rate was fine. The next week I went to the dr he first said I had Hypoglycemia. Week goes by and I try to work but I still feel lightheaded and pass out. So I go to the er in the next city. They said it wasn't emergency and gave me iv. I go back to dr, this time I got weak, shaky, sweaty, and couldn't walk. Doctor came in and said it was pots syndrome. He didn't know much but gave me beta blocker. I took them for a couple weeks. They didn't seem to work. Another week goes by I go to a different er a bigger hospital. They said I had s severe uti I took my medications. I still feel lightheaded, dizzy, weak and still get shaky. I don't know what's going on....
Kimmie - Get screened for HCM. This screening MUST
include an EKG/ECG, Echocardiogram, and a cardiac check up by a
cardiologist. Ideally the cardiologist should have specialized knowledge
of Hypertrophic Cardiomyopathy. This often gets misdiagnosed as something else. The light-headed and dizzy symptoms could very well be HCM. At least rule it out.
I think I might have pots I get really light-headed most of the time when I stand up. I fainted once. I been to a lot of doctors & had a EEG done. The EEG can back normal. I can't tell you how many times a doctor has had me lie down take my blood pressure, sit up take my blood pressure & stand up take my blood pressure. I also had a lot of EKG's done too. They came back normal too. I just wanna get to the bottom of this run around with doctors & tests. They always say I'm fine. Then why do I feel light-headed most of the time when I stand up?
Are you on any type of birth control methods? Example, Mirena or Implonon? If so, just want to let you know, they will give you these same side effects from the birth control. Same symptoms from POTS. Does that make sense?
I was diagnosed with pots 10 years ago at age 23. I still suffer and was old I would likely start to feel better within a few years. Instead I have a hard time getting out of bed, still experience syncopal episodes, and still face stigma from health care providers who don‘t care to understand my condition. I can‘t dance or go out with friends anymore. My life has been delayed. I try to exercise and just end up weak, shaky, and passing out or spending days recuperating from a short walk. I used to be athletic. It feels so hopeless to have an invisible illness and not be able to fix yourself despite your best efforts.
the doctors in Michigan have diagnosed me with pots and other doctors believe that muscular dystrophy/ CMT type b, is also attacking my heart. I'm 26 and even went into cardiac arrest in August. beta blockers haven't helped at all. And I actually get serious pain like a heart attack feeling. the emergency room just shoots me with morphine and more beta blockers, and sends me home. it's frustrating cause I also pass out. And IT scares my wife and I because she's the one who actually saved my life after my heart stopped. And we have a child on the way. is there anything I can say to make the doctors do more. after an ablation my cardiologist got mad at my suggestions after I did research, and actually told me YOU AIN'T A DOCTOR, ARE YOU! I feel lost on what to do. I can't work cuz of other injuries. but if my heart stopped again. I'm worried that something worse could happen. any advice?
Jay Dubbayou I know I'm commenting nearly a year after (so hopefully you're doing much better by now)!
I noticed you said they gave you meds (x3) to get your heart to a "normal" rate and then they had to shock you?
As opposed to POTS, it might be worth looking into a cardiac disorder called PSVT or SVT (both are very similar...). Atrial Fibrillation is another cardiac disorder that can present similarly to what you described.
Best of luck to you & others as we all navigate the world of family Doctors, specialists, testing, hospitals, etc!
I'm sorry you have to go through these things. Try seeing a Cardiac Electrophysiologist in your area. You might not be a dr but you know your body better than anyone else. I was told by two different specialist that they didn't know what was wrong with me and didn't know what to do for me! I continued to do my own research and was persistent with the physicians who would listen to me! Keep fighting and the only way we can get through all of this is to have a lot of faith in God!!! Pray for guidance!!
Now they're not completely sure. They're still giving me the pots diagnosis. But unlike pots, I'm having more serious symptoms. 2 weeks ago, they used a medication to restart my heart 3 times because it was staying at 195 BPM. And they couldn't slow it down. Then they wound up shocking me, and only got it down to 130 BPM. I also have a loop monitor implant. But other than a right bundle branch block, they can't figure out what's going on. I'm getting more frustrated. I don't believe it's pots. But my Dr has seemingly given up, and is sticking with the diagnosis. Despite the symptoms getting worse and not matching up. I'm literally losing hope because of these Doctors. I keep trying to find someone to take my case, but I can't afford travel. And since I faint randomly, I can't work. Seriously frustrated with this! If anyone knows a Dr who can help, please let me know! I just had a baby with my wife in June. And I wanna be around for them as long as possible. Please!
Wonderful information and very interesting. If someone has hyperandrenergic POTS, caused by Mast Cell Disease, are Beta Blockers still used? It is difficult to keep the data straight, but some sources will say that Beta Blockers can cause histamine response. Some sources will say, step down Beta Blockers before surgery, etc. Are any of these statement correct?
+ProudAmerican Dr. Fischer responded:
"You ask a good question. Beta blockers are still useful for most patients with hyperadrenergic POTS, but beta blockers can cause worsened symptoms in those with mast cell activation disorder. Without confirmed mast cell problems, it is typically fine to try beta blockers. Even with mast cell activation disorder, a brief trial of beta blockers would usually not be dangerous – but we should not be surprised if the patient reports temporary worsening and then needs to avoid beta blockers in the future. But, consult your physician.
Some people with asthma have worse asthma on beta blockers. However, even most people with asthma and POTS have improved POTS symptoms and no changes in their asthma when using beta blockers.
I hope these comments help. Obviously, an individual’s response to treatment can’t always be predicted ahead of time. Hopefully, ongoing research will help us better understand links between POTS and mast cell disorders."
Lastly, you said that POTS is very treatable for teens, but how about adults?
I was such a fitness fanatic in the past. Now, I can barely walk. My brain no longer functions like it used to. This is seriously debilitating.
I have been a man who was a fitness fanatic for years. Over the last few years, I had a few occasions where I felt difficulty with recovery during a workout. This may have been the beginning. But, after getting past a bad bout of bronchitis, my heart would race for no reason, for weeks at a time. It went away for about 6 weeks, with some very short bouts of high heart rate. Then one day, it came with a vengeance and would not leave. I am currently disabled. My doctors do not seem to have much information for me. I need an expert to diagnose the cause, and help me with my treatments. As far as POTS treatment goes, does anyone know of anyone in the Philadelphia region that is first rate when it comes to POTS?
Attention Mayo Clinic: Why is there nothing on your site about the connection between Ehlers-Danlos Syndrome and POTS?
I have been looking for comments or information about the connection between Ehlers-Danlos Syndrome (EDS) and POTS. I find nothing on the Mayo Clinic site about this, yet we have discovered that the syndromes often go together, especially in patients under 30 years old. Our experience was getting a diagnosis of POTS and then a year later a diagnosis of Ehlers-Danlos Syndrome, which is basically the cause (in our case and many others) of POTS.
Switching medicines based on the EDS diagnosis has helped considerably (now on Adderall to increase energy which allows for progressing with exercise, which has really helped; discontinued Floudracortisone and Propranolol).
Please research Dr fredrick Carrick... And find a functional neurologist that has gone through his training... Check out Illinois neuro and rehabilitation center.. Dr George michealopolis who is a Carrick trained functional neurologist... He has videos of pots and dysautonomia patients testimonials... I spent 11 days working with them and am finding the treatment very helpful... Also research copper toxicity... Most people with pots are copper toxic and I see mensah medical group for the biochemistry end of things... Most people with dysautonomia type conditions have metal mineral imbalances and I was one of them...high unbound copper wreaks havoc on every system of the body ..hormones, adrenals, thyroid, brain, gut, autonomic nervous system.. I had very high unbound copper And several mineral and vitamin deficiencys... Mensah Medical group put me on a individualized protocol of vitamins and minerals in therapeutic dosages for my unique biochemistry... Between mensah medical group and Illinois neuro and rehabilitation center I'm.finally making progress and regaining my life!
Your daughter needs nutrients in addition to dr george..i did both....pots is usually adrenal fatigue caused by countless low nutrients such as zinc chromium b6 b12 ...vit e...a...c. ...biotin etc ...your welcome to friend request me on facebook and ill give u all the information...research copper toxicity...adrenal fatigue and methylation issues ...
+Dena McElerney ; I am glad to hear that Dr. George helped your daughter. I have a 16 y/o with POTS and we are searching for answers and relief from her symptoms (biggest issues is her daily nausea and dizziness). What type of treatment can she expect? What type of diagnostic testing did they do? They told me that it would run me $500-800 out of pocket for some diagnostic testing up front.
We learned the hard way that failing the tilt table test is NOT necessarily an indication of POTS. Unfortunately the doctors at Mayo jumped to this conclusion for our daughter without testing for other conditions (such as anorexia nervosa). This led to 18 months of chasing down POTS treatments, at considerable expense, and being placed in the 3 week intensive POTS treatment program at Mayo, only to learn at the end of it that our daughter did not have POTS. We raised this to the attention of the doctors who diagnosed our daughter with POTS, but strangely they failed to admit any gaps in their process for quickly giving a POTS diagnosis without testing for other things with similar symptoms. I fear this means more people will continue to receive an incorrect diagnosis for POTS at Mayo (in particular teenage girls with eating disorders).
I also have tried florinef and midodrine they just made my symptoms more severe. My dr won't give me beta blockers because he said it will lower my bp more. I'm losing hope with drs and I'm tired of hearing I don't know from them. How can I convince him to put me on a beta blocker?
Beta blockers even if you have a low BP... Will work wonders if your have pots you just have to remember to take care of yourself very well while on beta blockers. Lots of salt and lots of water eat 6 times a day ect
+perfecteuphoria be careful with considering a beta blocker. they may not want you to have it because it will lower bp (i'm sure you were already told). If you ever choose to remove the beta blocker (you cant take it forever you know) the results could be terrifying. I am not a doctor, but I am a victim of this. I have been homebound for 5 weeks now and i'm not going to go back to school before the end of the year because i was taken off of a beta blocker (i was taken off because my bp was 90/60) . I suffered from a medical withdrawal in which i experienced cold sweats, trembling, migraines and an excessive amount of the usual pots effects. The last time i had to go to the doctor, I got blood drawn and i literally had to lay down flat on the lab floor for several minutes afterwards. My bpm was probably somewhere around the 200's. When i got up, there was a literal puddle of sweat where i was laying and i had to have extra help getting to the car and home. If you try eating lots of salty foods, nuts and drinking lots of fluid it may help you. Just know that beta blockers come with risks.
My pediatric cardiologist and cardiologist said the exact opposite to what this guy is saying, my doctors were rude, they blamed my depression and anxiety. But I'm glad this guy understands people who are suffering with POTS, because nobody else could've understood except the neurologists who specialized in this.
does anyone else with this get severe gut pains? I exercise daily but could not manage without daily opioid painkillers. also does anyone else get fairly strong palpitations even when resting and sitting upright?
https://www.facebook.com/groups/311105153775/?ref=br_tf to bad doctor do not research groups talking about the syndrome, what works, what does not, and why are there more then one form of POTS? there are many people with POTS but no two are the same I started taking notes with all the people in this group and found very interesting things like people with the some people with genetic form complain of feeling really hot while the non genetic condition they complain of being hot and having pain behind their eye. I could go on but as human being look at all the things and push who ever your provider is to make sure 100% of what the person has is POTS and not the possibility of hyperthyroidism or a catecholamine-secreting tumor, such as pheochromocytoma, should be considered. Laboratory studies should include determination of plasma and urinary metanephrine levels, and if they are elevated, imaging studies to detect pheochromocytoma may be necessary. http://www.mayoclinicproceedings.org/article/S0025-6196(12)00896-8/fulltext#sec1.2.2
I seen a doc at mayo to rule out heart, and confirm POTS condition he confirmed it but when I tried to make an appointment again with him for POTS follow up the receptionist and nurse said he could not treat her POTS and they had no other doctors available that treated POTS. I tossed out a couple names of doctors I researched at Mayo and that I seen worked with patients with POTS and according to the nurses and receptionist there are no doctors at Mayo that treat POTS. Meanwhile my daughter on most days can't sit up without falling back and complaining of her body being to heavy to lift, not being able to walk without falling after a couple feet.
Its nice to know its real, it would be nicer if more doctors knew about it and the ones that did made it easier to get into see them. I can only imagine the other people out there suffering but have no where to turn like me with my 15 year old daughter who's symptoms only seem to excel and get worse every time she has an episode
+MVP1290joe Hello. We’re sorry you feel your experience at Mayo Clinic was unsatisfactory. We have an Office of Patient Experience, and if you wish, you can call and talk to them about your concerns. (Minnesota: 507-284-4988; Florida: 904-953-2019; Arizona: 480-301-4938)
I tried two different beta blockers and developed allergic reactions to them both. What else can you suggest. I was told by my cardiologist that I have enough adrenaline for three people. I am miserable. Please help.
+Gensokyo Pokemon Thanks sweets! I drink at least 100 ounces of water a day and I always have a salt packet with me. I haven't heard about leaning against a wall though. Are you teasin me? I did find some relief from taking Lexapro and Clonodine (Bp medicine at night) but I will still get hit by adrenaline out of no where with no change in diet or anything. It scares me and it is changing my life. It is horrible to pass out in public so I fear I will begin to go out less and less. But hey, thank you for taking the time to chat with me and I hope you have a beautiful day.
+Boss Lady Lauren beta blockers can be a pain when taken off of. My suggestion is to drink lots of fluid and eat salty foods. You may also try to exercise to the best of your ability. I'm sure you've heard all of this, but it really and truly makes a difference. It may take weeks, months or even several years to fully recover. If you are persistent though, you should begin to notice the changes. One exercise i recommend is to lean against your wall for a while. Don't do it so much that you hurt yourself, but try to do it consistently. I hope this helps
My son was diagnosed with Hyperadrenergic Pots last March at the Mayo in Rochester. While anxiety is listed as a symptom of Pots, no one ever says much about it. I ask because my son's anxiety levels are off the charts. He gets adrenaline rushes that will continue for hours until he's ready to crawl out of his skin and winds up in a panic attack. We found that he has a food sensitivity to corn and that will definitely spike his problems, but so far we have tried just about every anxiety med on the market and nothing will help. He gets some relief with Xanax but side effects as well because it is made with corn starch. Do others suffer from this extreme anxiety brought on by constant adrenaline rushes, or is there something else going on here?
+Boss Lady Lauren Thank you so much for your replay and helpful information. I will look into the lexapro. Clonidine was not helpful, but I'm wondering because my son has a third Gaba B receptor, if the dosage was just too low. Again, thank you and God bless. Mary
What I experience during an adrenaline rush is a fear so powerful, your body fighting against itself, you want to lay down, your exhausted, but you can't because your heart is beating so fast. I found pacing the floor and taking very deep breaths to be beneficial. I also have a very calming music that I play and will try to do some yoga poses. Once though, my legs were shaking so much that I couldn't hold the pose. My advice is to right now when he isn't having an attack is to find some soothing music and some basic yoga calming poses. Then, when he feels the beginning of one put the music on and get into those poses. Also, do you have a blood pressure cuff? His bp needs to be taken. Get a measure of what his normal bp is. My bp would drop so I would take a little salt and water to bring it up, if its too high then he may need something like an anti anxiety medicine to use right then. I know no one wants to go on medicine and believe me I exhausted every herb, supplement you could imagine to no avail. He may do very well on an anti depressant. Again, I know we don't want to go that route sometimes but also remember this is occurring in the brain. We are wired to be extremely sensitive to stimuli. Led lights bother me so bad for example. Please look up Dr. Grubbs. He could start Lexapro at 5mg ( a very low dose). I have seen extreme benefit in Lexapro and clonidine but this is my body and we are so very different. Until then, reassure your son that you understand and that you are fighting to help him. When he has an attack and his mood changes tell him you understand and whatever he needs for you to do or not to do you will. Best wishes to you and your son, I am so sorry he is going through this. Let's hope we find more information on our journey together. Oh, and keep his sugar low that is a huge trigger for me. Lots of love, Lauren
+Boss Lady Lauren I missed your first comment, but I'm so glad you wrote you again. It's odd, but my son does not have the physical disability that so many others have, including my niece who has also been diagnosed with pots. He keeps going non-stop because of the adrenaline, until he just drops and will need 2 days in bed to recover. But sometimes the flare of temper can be really scary. It just comes out of left field for no reason. We finally learned the fix is to get him into bed with his feet elevated above his heart, and within 20 minutes he's back to normal, but when he's that flooded with adrenaline, almost manic, it's hard to reason with him that he needs to lay down. It's a horrible, negative cycle that just keeps feeding on itself. I know pots primarily affects women, and I'm wondering if it hits males differently. Less physical limitations and more mental stability issues.
+MilSpecAmmo I just had him back to Mayo to check that. His metanephrine levels were fairly close to normal. Regular beta blockers don't help him at all. It drops his blood pressure and makes him so weak he can't stand up. Right now he's on 2 mg xanax, 4 times a day. That dosage should knock him out, but it doesn't even phase him. In fact he still has breakthrough episodes at least once a day.
My son had TVAM last November. He is back to playing football in high school, enrolled in school this fall. He wasn't able to attend last yr due to cognitive brain fog issues were severe, hard time walking, couldn't read or remember, etc. He's living life again!!!!
My son who is now 17,has had issues since Spring, 2010. He was told by local dr it was all in his head. I took my son to Dr.Fischer @ Mayo 8/2013. Dx was Dysautonomia. We loved Mayo & all those that helped my son there. They were terrific. However, my gut told me there was more than medication for my son to get better. His case was severe & we couldn't wait for yrs for him to get better. We found Dr. Michael Arata @Synergy Health Concepts, Newport Beach, CA. He conducts an experimental TVAM procedure
So many of the people who have commented here should start looking at ME/CFS information (formerly Chronic Fatigue Syndrome). This is a multi-system disease, & POTS is a major symptom. It is classified as a neuroendocrine, autoimmune condition, and is misdiagnosed about 85% of the time. For many of us, it has taken between 5-10 years to finally get a proper diagnosis. And early intervention is so very important. Also, according to the CDC, MECFS is the leading cause of students missing school.
In the UK, it is noted on our Department for Work and Pensions descriptor for POTS that adolescent or development POTS tends to be of gradual onset, rather than sudden onset, more associated with specific triggers such as infection, injury, immunisation etc
My daughter developed sudden onset POTS following her HPV vaccination at the age of 13. I'm in contact with many other families of young teens who also developed sudden onset POTS immediately after their HPV vaccination. Do you take the HPV vaccination into account when you see teenage patients, do you aks if they have recently had this vaccination and do you report it to VAERS if there is a temporal association with the vaccine?
Dr Blitshteyn in New York has published twice in medical journals highlighting her concerns about the HPV vaccine being a potential trigger for POTS, and other specialists/scientists have also published articles with these concerns.
In January this year, Denmark highlighted cases of POTS following HPV vaccination with the European Medicines Agency and the EMA instructed Merck to collect more data from reports of POTS-like symptoms following HPV vaccination. Last year Japan withdrew it's official recommendation of the HPV vaccines following the high number and severity of ADRs associated with these vaccines and in recent months France has had public open debates about the safety of aluminium adjuvanted vaccines, including the HPV vaccines - there are more than 50 lawsuits filed with the French courts for HPV vaccine injuries.
If puberty is a sensitive period for teenagers to develop POTS, surely risky triggers, such as vaccinations which are developed to elicit a particularly strong immunological reaction should be avoided during this period.
My daughter has been ill for nearly 4 years and we have had to battle medical professionals every step of the way to get a proper diagnosis of POTS. We're still trying to find the underlying cause or damage that is causing the POTS, but in the UK doctors generally don't want to be involved in vaccine injury cases and so are very reluctant to go down this route for investigating. In terms of recovery, it's anyones guess as to what the future holds - we're keeping our fingers crossed that she improves enough to lead a full and independent life, but no-one can give us any answers. Unfortunately research into vaccine adverse reactions and the long term effects is rarely, if ever, done - no-one seems interested in the ones that suffer adverse reactions, they're simply discarded as acceptable collateral damage.
I have had pots, dysautomomia, and Vasovegal Syncope for about 2 years now. I'm on medicine for my blood pressure but it still hasn't improved. Everytime I stand up I almost pass out. My vision gets black, I can hardly hear, my pulse goes crazy, and my legs just about give in. Does this happen to anyone else?
I have had the same debilitating condition for six months now. I’ve discovered a Dr Josh Silver who practices specific upper cervical Advanced Orthogonal care in St Petersburg FL within the Pierce Clinic. He specialises in Atlas subluxations which can have an effect on our conditions. Certainly worth a phone call or email.
There is a POTS community on Facebook which is a great place for support. It's also a great place to ask questions. It's a closed group which means that after the admin approves you, all posts are private within the group. It's under the name POTS (Postural Orthostatic Tachycardia Syndrome). I hope this helps, as I too suffer from POTS.
I'm 17, I also suffer with Gastroparesis and other GI issues. Nothing seems to be working and I've been home schooled this past year. I can't tolerate the heat, taking showers is sometimes difficult. I can't go swimming and stay in the water for a long period of time because I can't hold my body temperature. It could be 95 outside and I could have goosebumps. We're still trying to find solutions, if anyone has any, please let me know. Also, do any of these things happen to you, too?
I just had a tilt table test done today and the tech were really worried about my bp and heart rate. They were borderline high when I was laying down but the minute they started tilting the table up it soared to 180's/110's and 160's was my heart rate. It stayed like that until they had me lie down again and it calmed down. The techs said it didn't look like POTS because my blood pressure didn't go down. I was wondering if that was true? I had the same dizziness symptoms and pounding headache after.
Yeah, that doesn't sound right. Was it at an Autonomic Testing Center? I'd ask them about it again if you have a medical portal or access to call and leave a message. Maybe get a 2nd opinion somewhere else.
You can have POTS with or without a drop in BP. Mine didn't drop at all with the tilt test- it actually increases just slightly. You could have a combination of POTS and something else though. See another doc!
Hello there. I have been low on energy for a long time and find it difficult to get out of bed and do something constructive. I also have had a shortness of breath after moving my hands along with my feet. I can walk for an hour without fealing any breath problems but as soon as try to lift or carry something I get acute breath problems. At the same time I have oxygen saturation of 96 - 100% in my fingers. I have had this condition for most of the last five years, have undergone a whole lot of tests and checks but every time I get the same results. I am simply in a better condition than can be expected after 41 years with diabetes 1. Can you give me an appreciation if I have POTS and how I can get my physician to accept this and deal with it.
Thanks and best regards
Thank you SO much for this video! Tomorrow I'm going for a tilt table test so I'd gotten on YouTube to see if I could find anything about what I might expect. A few clicks later, I found this video and your statement at 2:00 minutes in made me rewind so I could hear someone say the exact thing I've been feeling for the last couple of months. I'm so very appreciative that there are healthcare providers like yourself. Please keep being awesome!
Hi Dr. Fischer,
I am a 27-year-old female & have been struggling with GI issues for the past 3 months. It started with an upper GI bleed at the beginning of May, and since then, I've had loose stools every AM + extreme lightheadedness that can last all day. It is worse upon standing (orthostatic), after eating, in the heat, and after too much exertion. It is so debilitating - I can barely do anything but lay down. Do you think I have POTS? Can you recommend a Dr. in the NYC area? Thanks!
Hi Dr. Fischer,
My 12 year old daughter has spent the past 7 weeks at home with significant symptoms. So far no answers but POTS is at the top of the list. Her doctors aren't very familiar with this level of POTS. Is there someone in the San Francisco Bay area that you recommend we check in with for a consultation?
Hi Dr. Fischer,
I am 21 years old and have recently become aware of my hypersensitivity to postural changes due to panic disorder. My father is a cardiologist and I asked him about POTS and he said he thought that could definitely be something I have that makes panic worse. When I'm sitting my heartrate is usually btw 70- and 85 bpm, and then standing is usually 115 or more. I was just wondering if that sounded like POTS to you? I also have pretty low bp, usually 102/70.
Thank you for your reply, have you seen anyone get POTS at the age of 17-18 and almost recover? I just feel like I got it a little too late and it might not resolve fully!
Do you have an email address to communicate rather than youtube?
Thanks for your reply much appreciated!
Hi, Andrew. Here is Dr. Fischer's response:
"Thanks for writing. We now know that normal teenagers can have postural heart rate increases of 40 beats per minute while adults are usually less than 30. As a 22 year old, it sounds like your POTS has almost resolved already (as we would expect it to) and that your heart rate increases are nearly normal. I would expect that you would continue to recover without needing a beta blocker. Keep up the good work! -Phil Fischer"
Hi Dr. Fischer,
I have had POTS since about 18 and am now almost 22, male. My POTS is quite mild and my heart rate is my main symptom, it goes up from say 60-70 resting to around 90-100. I was wondering, is it possible for this to go away on its own in time as I got it as a teenager?
Also, would a beta-blocker be able to control the 30 beat increase? My blood pressure is usually normal and increases when standing for around 5 minutes.
Hello again. Here is Dr. Fischer's response:
"Fear not! POTS is associated with poor regulation of circulation, but circulation does not stop completely. I do not know of any case of POTS being fatal – but POTS can be very discouraging, and we must be careful to avoid untreated depression which can, of course, be fatal. Anxieties are common in patients with POTS, and you are wise to try to deal with your fears. Hang in there! -Phil Fischer"
Hi Dr. Fischer,
I have POTS but my suspicion is I have HyperPOTS. I'm due to have the catecholamine testin for this within the next week or so. I just have a question: How is it that they say POTS can't kill you, when tachycardia and high blood pressure or low blood pressure can? I'm just curious about this. I get very fearful. If I could manage my fear, I think I would be able to do so much better. I would really appreciate your insight.
What are the levels of severity this can present as? I have researched POTS a little and have found that it can get as debilitating as disabling mobility. What are the lowest severity presentations? Thanks!
Has miss 1/2 9th gr, sch admn fighting w/me.Even tho has all symtoms, except actual pass out & verified b/p #'s @home, still has mid 90's GPA. Has lost friends b/c don't und/stnd why not in sch.Before your video little hope for treatment.Strong Mem Rch NY suppose to be excellent-where are dr to get edu & stop w/blame depression game?Place call to insur co, but what to say to daughter & self as caretaker.Med ignorance isnt bliss.Salt & up h2o not help. wait on heart mon result when you read this.
Dr. Fischer, your video describes my daughter EXACTLY. Symptoms began Sept'12 after illness Aug/Sept'12. Have seen Ped NUMEROUS times since & is treating her like a psych patient but finally b/c of my anger sent us on to Gastro Nov&Dec then, Neuro Jan'13 who 1st talked about POTS & referred to us Cardio (appt. yest. Feb) for them to deal with. Cardio tells "NO one wants to deal with POTS b/c so hard" & AGAIN b/c depression "will be diff to treat, blurrs the lines". She was FINE before.
Hello again, I am writing to update a little on my situation as well as ask another question. It seems my cardiologist has detected what I thought were arrhythmias as premature heartbeats. I am going to start going to a cardiac rehab center that deals with POTS patients. However, he wrote on my script for the rehab that I have POTS/IST. I am pretty sure they aren't the same thing. He said it was a grey area. So how do I figure out if its POTS, IST, or something like SVT?
POTS is but a single symptom that many sufferers of Chronic Fatigue Syndrome (CFS/ME/CFIDS) live with. I appreciate the suggestion of beta blockers, and will discuss with PCP. POTS is extremely debilitating to me, and the potential relief from it (even a tiny bit) makes me weep with joy. So thank you so much for this. Unfortunately, with CFS, exercise is contraindicated. Please make sure you don't glibly suggest exercise to potential CFS patients - it's dangerous to their health.
Anyone can alter the heart rate in conjunction with breathing (sinus arrhythmia). So, it will be important for your doctors to determine if your “arrhythmia” is something significant and separate from POTS or if is one of these other variations of heart rate that can sometimes be called an “arrhythmia” without being particularly dangerous. It sounds like your planned tests should help sort this out. –Phil Fischer (part 2)
Thanks, Jamie. Here is Dr. Fischer's response in two parts: "The presence of significant arrhythmias implies that something separate or additional is happening instead of “just” POTS. By itself, POTS would not be associated with significant arrhythmias. But, it is possible for people with POTS to, at times, have a slow heart rate (sometimes called a bradyarrhythmia) or, commonly, a fast heart rate (tachyarrhythmia)." (part 1)
I haven't been officially diagnosed with POTS. However I my cardiologist is certain I have it. I will have an echo next week and be on a monitor for 24 hours. I diagnosed myself really. I contracted EBV back in October and I knew something was wrong. 4 ER visits, neuro, infectious disease. My parents thought a lot of it was anxiety or depression. My cardiologist is started me on a low dose of a beta-blocker to see how I do. My main concern is I also have arrhythmias. Have you seen this before?
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