Diet is seen as a key component of any dysautonomia or POTS syndrome treatment plan. There are many sources available on the Internet and in journals that make dietary recommendations for POTS patients that may result in improvement in symptoms. In this article, we will look at some of these recommendations, and talk a little about whether they are backed up by research and whether they really work in improving POTS symptoms. Several links to appropriate POTS syndrome diet resources are also provided.
To find experts in POTS around the United States check out XpertDox.
Increase Fluid Intake
One of the biggest problems in POTS is the inability to tolerate standing, due to blood pressure dropping and heart rate increasing. Part of the typical initial POTS treatment strategy is increasing water intake.
Water intake has been shown to help healthy people tolerate standing for longer, and be less likely to faint in response to prolonged standing (Lu et al). Water intake has also been shown to be beneficial in patients with orthostatic syndromes (Shannon et al). Most these studies examine the effect of drinking about ½ a liter of water over a five-minute period. Effects include improvement in standing blood pressure and reduction in standing heart rate, in addition to improvement in symptoms. In POTS patients, the fluid intake doesn’t have to be water to be effective. Soup was also shown to result in improvement of the blood pressure response and also in symptoms (Z’Graggen et al). This suggests that as long as hydration is maintained, it doesn’t matter too much what the fluid is.
A study done in 1999 looked in to one of the ways this actually worked (Jordan et al). It was found that it stimulated the sympathetic nervous system and raised the level of the stimulatory neurotransmitter norepinephrine, helping to maintain blood pressure.
Summary
Its important to maintain adequate hydration in POTS syndrome. There is a general recommendation to have >2 liters per day, or to maintain clear urine and this seems reasonable. At times where there are prominent symptoms of dizziness on standing, there is some evidence that drinking about 2 glasses of water over a few minute period may relieve symptoms in some patients.
Increase Salt Intake
There is typically a recommendation to increase salt intake in POTS syndrome, even to increase sodium intake to 5-10g/day for very symptomatic patients. Others would generally advise that salt intake is increased by 2-4g/day. There are dietary ways to do this, and if salt can’t be increased adequately through diet then salt tablets may be used if advised by a doctor. Salt should of course be avoided in those with kidney disease or heart failure.
Usually this is added to meals to achieve increased intake. One tablespoon of salt contains between 2 – 2.5g of sodium. When salt tablets are used, they may cause symptoms such as nausea and coated tablets may therefore be preferred. Salt supplementation is most likely helpful if combined with a gradual exercise program (Fu et al).
But why do we want to increase salt in the first place? The reason is that the amount of sodium in the body is directly related to the amount of circulating volume. So basically more sodium would mean more volume, which would mean better tolerance of orthostasis and less symptoms. There is some evidence that in adults with orthostatic symptoms, salt supplementation may decrease symptoms (El-sayed et al). There are no specific studies in POTS looking at this, however most would still recommend at least an effort to somewhat increase dietary salt. Its important to note that salt supplementation will not help in the hyper-adrenergic form of POTS. Ongoing studies are looking at whether a high dietary sodium level results in improvement of symptoms and signs in POTS patients (trial link).
Summary
Most experts would recommend that there be some effort to increase dietary salt in POTS patients by around 2-4g/day. Particularly symptomatic patients may benefit from as much as 6-8g sodium/day if recommended by a doctor. Initial efforts should be made through dietary salt, and if necessary salt tablet may be used if part of a treatment plan.
These are some links to guides of sodium content of different foods. Usually this is used to avoid the high sodium food. But in this case you can simply look for the high sodium foods and see which ones you like!
http://fcs.tamu.edu/food_and_nutrition/pdf/sodium-content-of-your-food-b1400.pdf
http://apjcn.nhri.org.tw/server/info/books phds/books/foodfacts/html/data/data5a.html
This is a link to a useful resource for a diet higher in sodium: http://www.potsrecovery.com/p/lotsa-salt-diet.html
Lower Carbs and Smaller Meals
POTS patients are generally advised to eat smaller meals more often rather than larger meals, and also to limit the carbohydrate in their diet.
POTS patients may complain of worsening of their orthostatic symptoms after a meal. But why is this? When a meal is eaten, there is increased blood flow to the digestive system in order to help the digestion process. In POTS there is already a problem with blood pooling in the lower part of the body, and not being returned to the heart or upper body as usual. So when a large meal is eaten, there is an added stress of a large amount of blood being diverted to the digestive system, and resulting pooling of blood in the vessels that supply the digestive system (Jensen et al). Eating too fast may also contribute.
There is also evidence that the higher the carbohydrate content of a meal, the greater the lowering of blood pressure in patients with orthostatic symptoms. The blood pressure was seen to be higher in those that limited carbohydrate content in their meals (Vloet et al)(Gentilcore et al).
Summary
It’s reasonable to suggest that POTS patients, try eating smaller meals more frequently rather than a few large meals a day. It’s also recommended that carbohydrate content of meals is limited, particularly in patients that experience symptoms after eating.
The Effect of Caffeine
No study has closely looked at the effect of caffeine in POTS patients, however we can look at other studies to help us with this.
In some patients with orthostasis caffeine may actually be helpful to some in preventing the blood pressure dropping too low when standing (Dewey et al). But, other studies have suggested that intake of caffeine may actually impair the normal responses to prolonged standing, resulting in a lower blood pressure (Berry et al). In the subset of POTS known as hyperadrenergic POTS, levels of natural stimulants (known as catecholamines) in the body are high and caffeine, being a form of stimulant can possibly worsen the situation.
Summary
In terms of drinking coffee, there is no good evidence that it is helpful for POTS. Although there is no strong evidence that is it harmful, certain individuals may be sensitive to caffeine and so it’s probably worth avoiding caffeine to see if symptoms improve. Those with hyperadrenergic POTS should certainly avoid caffeine. Over the counter caffeine supplements should be avoided unless part of a treatment plan discussed with a doctor familiar with POTS.
Limiting or Avoiding Alcohol Intake
POTS patients are typically advised to stop drinking alcohol, or strongly limit its intake. Lets take a look at the evidence underlying this recommendation.
Alcohol use has been related to passing out spells even in healthy young adults (Dermksian G et al.). Alcohol use is also associated with impairment of the body’s usual response to regulating blood pressure when standing. A nicely done study (Narkiewicz et al.) showed that this is because alcohol use prevents blood vessels tightening as usual, stopping the return of the blood to the upper body and the head. This may lead to low blood pressure, dizziness and possibly passing out. Often the muscles, especially in the lower body, tighten in an effort to increase blood flow return to the heart in response to a lower blood pressure. There is also evidence that alcohol use blunts this muscle response (Carter et al) which may also explain the worsening of orthostatic symptoms with alcohol use.
Alcohol is a strong diuretic (Roberts). Basically meaning it causes the kidneys to pee out more water leading to dehydration. This is a lot of what leads to the hangover effect. When it comes to POTS syndrome, diuretics and dehydration are avoided at all costs. In fact increased fluid intake is typically recommended. So it would seem crazy to stress an already fragile system with alcohol!
Summary
In view of the above, its very reasonable to advise avoidance of alcohol in patients with postural orthostatic tachycardia.
Avoid Energy Drinks
Energy drinks such as Red Bull have been implicated in development of POTS in young people. In one published report, avoidance of the energy drink resulted in complete treatment of the POTS syndrome (Terlizzi et al).
Energy drinks typically contain Caffeine and Guarana. Caffeine may exacerbate POTS symptoms in some patients. This is discussed in more detail in the section on caffeine below. Guarana is also a stimulant and contains twice the caffeine found in coffee beans.
Between 2004 and 2006, there were over 40 reported cases of adverse reactions from energy drinks in the USA alone and energy drinks are seen as a growing problem (Reissig et al). Symptoms reported included many of those seen in POTS such as tachycardia, tremors, dizziness and chest pain. There have been associations with seizures and even death (Clauson et al).
Summary
Energy drinks are certainly not beneficial for POTS syndrome, and there is potential for deterioration of symptoms. It is reasonable to recommend avoidance of energy drinks in POTS patients.
Allergies and Intolerances – Gluten and Dairy
Depending on the symptoms experienced certain conditions are worth considering in patients with POTS syndrome and may worsen symptoms if left untreated.
In patients with predominant gastrointestinal symptoms, celiac disease and gluten sensitivity may be considered. In some patients with these symptoms it may be worthwhile discussing a blood test with their doctor and also a trial of a gluten free diet to see if symptoms improve.
The same goes for lactose intolerance. In patients with lactose intolerance, avoidance of lactose containing products may result in improvement of symptoms. Many patients with lactose intolerance have diarrhea as a symptom, which leads to fluid loss and can potentially worsen POTS symptoms.
Summary
In patients with POTS and gastrointestinal symptoms, it is worth talking to your doctor and considering gluten or lactose intolerance, as treatment may certainly result in improvement of some symptoms.
I experience almost all symptoms. Especially dizziness, but all the time. Not only upon standing. Saw many doctors and did every test in book. They have no answers. When I came across an article on POTTS, I thought,hey this is me!! I was also diagnosed with neurofibromatosis (NF1).Does anyone know if there is a correlation?
I do have POTS. In order to treat symptoms I take midodrine and fludrocortisone to raise my blood pressure and Flecainide to stop my heart palpitations. With this combo I can get up without being totally exhausted every day. I still struggle with fatigue, but it’s rare to have any dizziness and many of the other side effects. Eating almost always makes me feel awful, so I’m trying to work on a new diet plan. I’m celiac and allergic to dairy so I’ve fought other dietary changes, however I find it’s nevesssry to do so now.
Cathy hear my daughter is on gulten free and dairy free diet and i am going to tell you after two years of going to docters and hospital no one has said anything about pots but has all the symptoms and yes the diet has worked it is 6 weeks since and has been in top form best of luck.
My daughter’s cardiologists put her on Concerta after a study from JHU came out. It has helped her energy levels and heart palpitations by 80%.
So why is it that so many of these young people WANT IV Ports if this can be managed with dieting and fluid intake and meds to help with blood pressure,etc.?
Because it can’t always be managed with diet, fluid and meds. Some people are wheelchair bound and others can’t eat anything because even if they avoid caffeine, have higher salt, low carb, their heart rate still increases to 200 and nothing helps. Sometimes the only option is to bypass the digestive tract and give the patient body’s nutrients directly. Lots of people also have POTS with MCAS or gastroparesis.
I don’t think young people neccessarily “want IV ports”, they just want to feel less sick or do “normal” things.
If you have any questions, please feel free to ask! POTS is a relatively new area of medicine and we can only learn by asking 🙂
Did anyone tried to take Omega3 supplement? It Help me enourmously. I take it before the meal especially bigger meal such as lunch or straight after the meal. It eases the symptoms and I don’t feel so unwell after the meal. Also my blood tests improved !
Wow. Way to blame the victim. Nobody WANTS a port. Everybody wants to be healthy and normal and not spend hours in the ER for an infusion, (not to mention face the bills.) First of all, it may take years to get the right combination of medication physical therapy and dietary restrictions in order for a person to feel CLOSE to OK. Most people with POTS have other syndromes or illnesses that make symptoms worse and complicate treatment. In the meantime, passing out in the shower or walking up the stairs and not being able to get out of bed are a reality without periodic infusions. Sometimes treatment just doesn’t work enough and the effect is cumulative. If the person is brave enough to get a port and do these treatments at home, it improves their quality of life. They can spend less time being sick or hospitalized. Since doctors prescribe this and insurance pays for it, chances are that people with actual medical knowledge accept that this is a win-win. ERs are less burdened, insurance pay-out is less, and the person has more control over their health and quality of life.
Many POTS patients, even with adequate hydration, may still be hypovolemic. Because of digestion issues there may not be an adequate absorption of those fluids so they may still suffer from low blood volume. Therefore getting an IV bypasses the gastric issues and increases blood volume directly.
What are other things you have cut out of your diet? I’ve just been diagnosed with pots and I cut out dairy and gluten 7 years ago due to test showed very allergic. Looking for help I’m feeling pretty alone with this. Thank you for any help
Hi Deanna,
Hope you see this, I’m trying to get a diagnosis but have all the signs of pots and hypermobile eds. I’ve been gluten free for about 10-12 years now, I also have hiatus hernia, reflux oesophagitis and ibs but over the years my stomach has really got better. I’d say keeping gluten free and eating small bland meals seems to help most especially things with rice or potato and I eat lots of crisps / potato chips. I’m just learning about pots and eds after having symptoms for years and only being told I was hyper mobile last week! I had suspected coronavirus last April and got an oxygen saturation finger meter for that and although my heart rate has been pointed out as being fast when I’ve been to hospital for various things I’ve just noticed that it can get down to pretty much normal if I lie down then up over 100 if I stand up. Would be great to get a proper diagnosis after all this time.
Have you done the Beighton test for hypermobility? Do you have any other conditions? Would be great to be in contact with someone else who’s new to this.
Hope you’re doing really well
Peggy
I will try to make this as short as possible so please bear with me. I have POTS, EDS, MCAS, adrenal Insufficiency and others but these are the 4 conditions I tend to find a link between. I have IBS and also feel like any and every food causes stomach pain, odd symptoms (like feeling dizzy, “off” or sleepy), acid reflux and gas pains so intense I used to think something had ruptured. But I came across Monash University a few years ago who created the low FODMAP diet and have found it helps me the most. It is absolutely worth looking into. It is complicated at first but very worth it. There wasn’t much info available when I first started the diet but I know Monash has a course for patients for $30 now. Make sure to get info from Monash bc not all blogs/sites are accurate. I also have to restrict soy & gluten due to sensitivities and have found carbs to be hard on my POTS especially large amounts or eating them solo. I stick to a small amount & as a side to meat etc. I think it’s important to eat small meals more often. Eating too much or too fast is a major trigger as well. It’s a hard journey but not impossible. I still struggle but I hope this helps someone!
Wow I don’t even know where to begin. Back in 2014 I went into the hospital with a basic UTI. It all went downhill from there. I basically got sick and then became septic. I was misdiagnosed several times, and treated like an anxiety patient. Many doctors thought I was just anxious, and maybe a little dehydrated. After four years of this and a move to Minnesota, I was finally given a correct diagnosis. However, because it took so long to be diagnosed I have a particularly severe case of pots. I often feel overwhelmed, scared and helpless because I have no control over this. I have incredible physical pain, sleeping is out of the question because of my startle response. My heart rate has been as high as 195, and that’s when at rest. I think the worst part of all of this is, there is no cure, all one can do is manage the simptoms. Meanwhile, I am exhausted all the time, I shake so bad I can hardly hold objects for fear of dropping them. I also have gastro issues, my balance is off, and I am dizzy all the time. I never know when my blood pressure will drop, and my pulse will skyrocket. It’s disheartening to know that most medical professionals no very little to nothing about pots. I certainly can’t explain it to them when I hardly understand this myself. I literally have to think about brushing my teeth, how to get dressed, and other basic tasks. And the brain fog is always present. My own family thinks I have anxiety, and just need to suck it up. I am simply stunned, overwhelmed, and disgusted that my medical team knows so little about this disease. This has been unreal. I was an active person who worked out every day, and now it’s all I can do to stand and perform basic functions. I have yet to respond to any of the medications, so I feel much like a human dart board. The pain component of this is off the charts. There have been many days where I am in tears because I can hardly move because I am in so much agony. Also, my neurologist informed me that because of this, I now have neuropathy. I sometimes have to use a walker for balance purposes. I honestly don’t know what else to say except I wish medical professionals knew more about this. if they did, I am certain they would not be so quick to dismiss pots patients as anxiety cases.
I have to ask if you’ve ever been tested for Lyme disease? Your symptoms make me wonder. A good friend of mine has chronic Lyme disease which was not diagnosed until 20 years after she got it. I have POTS but because I have done so much research about Lyme disease, and my close friend has it, I know there can be very similar symptoms between the two. At any rate – I just wanted to run the thought by you. FYI, the standard testing for Lymes is not 100% accurate…but I know there are non-standard tests that could help with a more accurate diagnosis. I don’t have the info with me at the moment, but I could let you know more about those tests if you’re interested.
hello! I would be interested in non-standard Lyme disease tests. I would be happy to hear about them. Thanks in advance.
I’m interested in the non standardized tests too please. I also have pots, eds, tarlov cyst disease, ect.
Thanks!
Hey I’m 30 year old and also have similar problems. I started with fainting dos at school age 6 year old.. I was seen by drs and so called specialists who first said I was growing to quick for my body to cope. Then as I got to adolescence I was told it’s anxiety attacks. I was pressured in to going to see councilors and work with cognitive theropy which was terrible .. I’m 30 now and 2 years was told I had pots. They trial me with tons of tablets but nothing seems to work. I feel tired out all the time I can’t sleep or do much because of little energy. I had an appointment 2 months ago with a cardiologist again and was boycotted with a man from cognitive theropy I was told that they think I have emotional problems and severe anxiety they insinuate that I must have had abuse or troubled family life. It’s a disgrace. I’ve been passed from one specialist to the next and still no propper diagnosis is made I can’t work or do anything usual guys my age would do. There’s talks in going to be sent to London to see a specialist. But it shouldn’t come to that why do i need to go to the capital city just to be listened to and have a propper diagnosis the longer I’m left the worse in getting. It’s so frustrating
hi I have stumbled across your post whilst researching my high heart rate of 203 resting . after many yrs of blanking from drs my family get to see a geneticist after taking my granddaughter to a private rheumatologist because she and my daughter were really unwell and both were suffering recurrent severe infections . my granddaughter was refered back to nhs geneticist and cardiology , before we got the results my daughter sadly passed away , the results came back with loeys dietz syndrome SMAD3 , this is passed onto 50% of family members and one parent at least is the carrier, this leads to me and my own health , so yrs of extreme back pain and an lower op 12yrs ago , empty bowel and loose or firm stools, brain fog ,sinus pain and allergy sensitive rashes mainly in roof of palette I could go on but it will bore you I am sure , the nhs has been failing to diagnose connective tissue disorders for years and they had continually insisted that stress and anxiety were our problems and currently I am still battling with them despite both my daughter and granddaughters confirmed status . my only advice is to ask directly if you have a connective tissue disorder as they wont tell you unless you ask and there are so many conditions that cross over with symptoms and ailments , however a blood test will tell them most of what they need to know , good luck . also loeys dietz needn’t be life shortning with correct diagnosis and treatment so ask away .
I am so sorry for all you have been through. I cannot imagine the pain of your greatest loss.
As anyone with a rare disease knows it’s a constant, relentless, and I fear lifelong struggle with doctors. I was born with a Primary Immune Disease, Cvid, but not actually diagnosed until I was 50. Spent my life in and out of hospitals and being branded as some kind of nut case. As a result of delayed treatment I now have 6 autoimmune diseases and a few other anomalies. Currently, I have been struggling with some kind of a ‘phantom’ heart issue that no one can figure out yet. I stumbled across the info about POTS and freaked out !! It’s me !! Every symptom, right down to the inexplicable sweating events (horrendously bad) and the possible triggering causes. Amazingly, I am in the middle of a cardio work up to try to find out why I can’t catch my breath after walking 3 feet… I sure as shit hope my cardiologist knows something about POTS.
My question to you is who diagnosed you with POTS? Did you get the tilt test ? Also, is the blood test you mentioned for connective tissue disease basically a test for inflammation and ana ? Any knowledge you could throw my way I would take with the greatest appreciation. I’m still in shock over this whole thing… another impossible disease to deal with. I am worn out.
Best of everything to you and your family…
Hello,your story is very close to my daughters. it is a shame that there is so little help avail
ble for this illness. My daughter was seen recently by a DR. Brent Goodman at the Mayo clinic in Phoenix Arizona .He is the most knowledge
able Dr. in this field that we have found . My daughter has seen many. For the first time we have real hope. He has a waiting list but be persistent.
God Bless you.
I looked up DR. Goodman to see if it might be good to take my daughter there. It doesn’t mention anything about POTS in his bio. What did he help your daughter with. My daughter has Celiac Disease and POTS and about six months ago she started having terribly gastro issues, more headaches and is exhausted all the time. I am willing to take her anywhere to get some help but feel it should be worth it. Could you expand on your experience? Happy to give you my email if that is easier.
Look up POTS and physical therapy. You have to find a PT who knows how to treat POTS. Medication only worked a little. Compression garments were painful and too exhausting to put on, even with help. PT with the right person? From wheelchair and bed-bound to walking and doing OK in 6 months.
I am so sorry, my son is in the same boat. I wish you peace and rest
Please look into contacting a functional neurologist. These are chiropractors that focus on improving all sorts of neurological and bodily conditions. They’re trained to assist with conditions like yours, and I’m certain they can help you. You can find them online and generally they’ve been trained by either Dr. Datis Kharrazian or Dr. Leo Carrick of the Carrick Institute. I promise there’s hope for you.
Fantastic description of what POTS is how it affects us how it is extremely painful at times.How it is misunderstood and misdiagnosed in the medical community. The lack of specialists and the distances we have to travel to get proper treatment.
I came across your comments Gracie and my heart goes out to you. I know this is from 2017 so I don’t know how you are now, but I would highly suggest you go to potscare.com and talk to Dr. Driscoll. She gets to the root of your issues and YES you can get better. She had pots for 12 years and did so much research. Her two children also had it. She is an expert and she doesn’t just treat symptoms. I am on the road to recovery because of her. Please phone and get help. There is help available there. She is in Texas.
I am scheduled to go see Dr Driscoll in early November. Were you happy with care and evaluation there? She had same symptoms as I have and no one else can figure out. 20 years POTS and new symptoms started last 3 years. Feel electrocuted. Many many sensitivities. Praying for any relief and any recovery! Hoping she is finally the answer and some help!
Gracie,Bless your Heart…
As I read your story I felt I was reading about my Daughter..Tori,Bless her heart, she has been thru Heck like u..She is Lucky enough to have found a POTs Dr in
Oklahoma City…Thank the Lord…now I think We are gonna Have one in Amarillo or Lubbock…which that will be Absolutely Spectacular…
The drive just kills.her…
Gracie, I will Pray for you…Maybe yall should all get together and get a POTS support group where yall can talk and tell each other what you have found what works…
Have you been checked for Chiari Malformation?
I have a similar problem, called pseudotumor cerebri, witch makes things that act as tumors appear in my brain. I experience consistent migraines. I do not know of any coronations, but psedotumor celibri is yet similar to your problom, and I too have POTS. Maybe pots and brain tumors are connected??
I am sure NF coinsides with Dysautonomia. Your NF physician should be able to test and treat you. My step daughter has NF type 1.
That is what my daughter has same things as you.
I want to tell anyone on here that’s been diagnosed with Potts to look into information on low adrenal function. The symptoms are the same and conventional doctors do not have testing for adrenals. You would probably need a doctor that specializes in this or some sort of naturopathic doctor. Adrenals are tested through saliva at certain times of the day. A very good site for information on this is draxe.com
Lots of good information and would be a start also start googling symptoms and treatment for low adrenal function. Information suggests that low cortisol levels are partly responsible but it does get more in-depth to repair
I have a lot to say. I think I am about to write all of you a book about my suggestions so i would almost suggest curling up by a warm fire first! There are so many things about being diagnosed with “POTS” that anger me. First of all is that the name POTS does not actually refer to a real disease or disorder, but a set of “symptoms” that are all caused by something else. In our effort to give the terrible things affecting us a name, we have used this diagnosis as an endpoint, instead of actually naming the real underlying and interconnected thing that is really wrong with us. It is like a doctor diagnosing you with “Hives”, which is the end response symptom of an “allergic reaction”, instead of diagnosing you as being “allergic to ragweed” that is causing hives as an end result! “Hives” is not a disease or a disorder. It is a symptom of a disease or disorder. Getting diagnosed with something like “Hives”, instead of the real thing wrong causing the hives, creates a medical endpoint where you put the wrong name of something wrong with you as a diagnosis. Instead of finding the exact problem and actually treating that which should make the symptoms go away. POTS is the name for a set of symptoms. POTS is not the name of any actual cause of any of your symptoms!
I agree totally and second your frustration, thank you! Why do I have to explain to cardiology medical staff that just finding a possible category or name for my symptom cluster is not adequate to diagnose the etiology / underlying cause of various medical symptoms? When asked if I should be referred to a neurologist for further assessment of possible “neurally-mediated orthostatic hypotension”, the cardiology PA replied with a puzzled look… “Well, If you want me to.”!!! My response, that she should determine if that is an appropriate referral, was met with little if any understanding of that logic.
I have the symptoms of P.O.T.S. and I have hEDS, Hypermobility Ehlers-Danlos Syndrome. I keep trying to find articles that will help me to control my symptoms. I have poor sodium retention and very low blood pressure at times causing dizziness. I must drink water all day long and eat salty foods but must also eat a very narrow diet. No dairy, no gluten, no nightshade veggies or fruits and limit sugar intake. I have a very boring diet! I am also 72 years young and want to stay mobile as long as I can but I can tell that my hEDS has gotten worse as well as my possible P.O.T.S. Sorry but the medical community has little to offer me but comfort. Any other articles out there that could be helpful?
Why Sydney do you not eat night shades? What evidence/research based material has been presented to you that indicates you must exclude those? If you do eat any, what happens?
Just curious
Hi. I know your comment is from 2017 but here I am to offer hope. Please contact potscare.com and talk to Dr. Driscoll. She has EDS and pots for 10 years and is well now. She brought a group of doctors together and researched and researched and she has found answers. YOU CAN GET WELL!!! Please call and talk to them. Also ask for her downloadable book on EDS and pots. It’s totally enlightening. I am on the road to recovery because of her. YAY! Her clinic is in Texas. Call her.
My doctor says the same thing that I have neurally mediated hypotension syncope and not POTS. Whatever is it to be perfectly healthy and able to do and orange theory class to then falling and breaking my front teeth and not being able to walk around a block is nuts. I’d happily pay for a socialist to really tell me what’s going on. I’m so tired of not having the right answer and Family members think it’s anxiety or me going through menopause. I’ll figure it out but if anyone knows any great specialists I’d surely travel to see them
O.k. so I am basically responding to all these comments. Please go to potscare.com and talk to Dr. Driscoll. There is help available. She had pots for 10 years and both her children had it. It made her really motivated to find answers. And she has them. You can get well from this. There is hope. Please call her. Tell her Cassandra sent you. I am on the road to recovery because of her. She is the smartest yet most humble person. And she knows what you are suffering because she had it so much worse. She was in a wheelchair. Now she is a beautiful healthy person. CALL HER!
Crystal I was interested when you said you are going through menopause as before I went through the menopause what were barely noticeable effects, ramped up to fainting almost every time I went out. It took years before an ER Dr referred me to a Cardiologist who after more tests diagnosed me as having POTS. With extra salt and water and walking regularly, and avoiding ny triggers fainting is a thing of the past. However the digestive problems – all day nausea, going between constipation and several bowel motions, and developing many food tolerances has taken over my life. Not sure where to go from here. Any suggestions anyone?
Please contact me emily 9154335110
Ok, having got that off my chest let me continue with less ranting and more actual helpful things. First I would like to talk about food and how the body has a million different things happening when you eat, many of which affect heart rate, blood pressure, adrenal response, nerve damage or nerve regeneration and so on. For people experiencing POTS like symptoms, the suggestion of eating small frequent meals can not be too strongly recommended! It goes much deeper and detailed than simply eating low carb, small frequent meals though! And the term “low carb” is often misunderstood. people tend to group both simple carbs and complex carbs together as “all bad” when really it is ESSENTIAL that you eat a LOT of complex carbs for good health and try to keep the simple carbs down to just a little bit. in terms of reactions, simple carbs will set off chain reaction in your body that will end result in tachycardia, inflammation, nerve damage, organ damage, adrenal draining and more bad things. Complex carbs don’t cause any of those reactions, mainly because of how they are broken down during the entire chain of digestion that puts stuff slowly into your system instead of dumping a lot of chemicals into your system all at once like simple carbs do. When you eat a simple carb thing like; starchy foods (rice, potatoes, wheat, corn) , fruit, carrots, anything made using cane sugar or corn syrup, processed grains, pasta. Then your body gets literally injected with the fast breakdown of sugars within 5 to 15 minutes after you eat them. This triggers off a bunch of reactions from all your organs that in the case of POTS, might be already stressed and overreacting, like your adrenal glands, kidneys, heart etc. In a normal functioning adrenal gland, they see new chemicals come into your bloodstream like vitamins, hormones, sugars etc and so they secrete their own combination of chemicals to compensate for what they see in your blood. for example: sugar is very damaging if it stays in one place for too long. it causes inflammation of organ tissue and breaks down the protective sheath layer on you nerves. Your body needs sugar but it doesn’t use it as pure sugar. A bunch of different things will grab sugar out of your bloodstream as it flows along through your body and convert it into other stuff. that other stuff is good and useful and gets used up quickly and the leftovers get grabbed by your kidneys and dumped into your bladder along with everything else you pee out. But to help the newly introduced simple sugars from the food you just ate move around quickly through your body so they are not just sitting around causing damage, your adrenal glands secrete adrenaline so your heart rate picks up and beats faster to move the bad sugar around faster through your body. in the case of people with problems like POTS, they are already stressed and dump too much adrenaline out, so your heart see all this extra adrenaline all of a sudden and things that it needs to compensate for running a marathon! which is why you get the super high tachycardias and also why they tend to go away within 30 minutes after they start because by then the adrenaline is all gone and spent and so is the sugar in your blood that triggered the event in the first place. But now it has left you weakened. Your adrenal glands have less stuff in them now. less stuff you need just to feel “normal”. and it takes time to rebuild those chemicals. if your adrenal glands THINK they need to release adrenaline, but are too low, they will release Cortisol instead along with other possible wrong hormones that trigger all sorts of wrong signaled reactions from your body’s other organs. it puts your organs into a mild state of shock that they each in turn try to compensate for, sometimes badly, and the more irritated they are the more likely they will just freak out and go into an emergency mode.
Hi Emily
I know that yours is an old post but this is exactly what happens to me after I take vitamin supplements- tachycardia.
Please reply about what to do to mend the adrenal glands so I can function properly again
Hi Emily.
Did you write that book on POTS? You have awesome and clear information and I appreciate everything you said about food. It helped me. Thank you.
Now, other things will also cause your adrenal glands to “over dump” stuff into your bloodstream that will, in turn, cause you to have a temporary tachycardia, usually lasting anywhere from 10 minutes to around 45 minutes before it settles down, assuming you are not taking any medication for tachycardia at the time like a beta blocker. If your bloodstream suddenly has a decent increase of a stimulating vitamin, like any of the B vitamins, Vit C, D, or zinc, then the exact same adrenal gland reaction happens like it did for seeing the sugar in your blood, except stronger. it dumps adrenaline out into your bloodstream, which triggers your heart to pump harder and faster, so that these vitamins are rushed off around your whole body quickly to get into all the areas they need to be distributed into. Then the spent adrenaline is turned into pee. These vitamins often have other reactions like being vasodilators, meaning they open up your blood vessels making them wider and more porous so stuff passes through them easier and you get increased blood flow into areas that might not normally get good blood flow. This helps get good stuff into hard to reach areas. It also triggers off your adrenal glands to compensate EVEN MORE than normal, so it dumps even more adrenaline into your blood and you get an even bigger tachycardia reaction to sudden high vitamin intake than you do with sugars. Especially the B vitamins! While simple sugars or simple carb foods might trigger a small tachycardia episode that may make you hit 110 bpm to up to 130 bpm ish range, the tachycardia triggered by a stimulating vitamin will be higher and have longer lasting side effects because it caused your adrenal glands to dump even more adrenaline and other chemicals out. So now they are even more depleted and stressed out. This is what makes you feel completely exaughsted after a tachycardia event, even for days after the event. It takes time for your body to make more adrenaline to use. until then, you have very little left to make your body have the energy to do even simple tasks like: sitting up, lifting your arms above your head so you can wash your hair, bending over to put dishes into a dishwasher…. Normal stuff you shouldn’t have to think twice about becomes hard to imagine doing because you are simply so tired and spent, even though you have done nothing that day. You are just low on all your chemicals. That horrible feeling of complete fatigue can and will go away if you can stop the chain reactions happening in your stressed out adrenal glands and rebuild your energy stimulating chemicals back up again, without starting the over-dumping cycle all over again. So after understanding this, you can see how taking any kind of stimulant, like caffeine, will have the same end result. it dumps too much out, which leaves you depleted until you rebuild, but its hard to rebuild when your organs are set to dump at every good thing you try to put back in while it is in stressed out mode.
I agree. I have actually just came across this information myself. I was being intuitive about how my body was feeling and the trends of others. My past as well. I had anorexia. I am good at eating the right foods. But a balanced meal and different nutrients not so much. I never was. Could salt possibly reduce the chain reaction? I am glad you talked about the adrenal glands. I did not know that. I did know my body was dumping everything good out despite my reduction on water. They talk about a diet but never get into the details of what you need. Not to mention they rely on labs too much for malnutrition. If you find anything else about this chain reaction pllllease share. The end points of a illness seem to be where a doctor has the least knowledge of. It is where the body gets stuck in a trap. It need these good things to get better and recover. However it is not accepting it no matter what we try to do. Also in turn can make it worse. I also have Ibs which is another thing I never had. Possibly leaky gut or maybe that is the adrenal. When I try to put in those nutrients it hurts so much. The body cannot recognize what is good and what is bad anymore. The question is how do we get it to recognize and accept the good? It almost looks at all things as threats. There has to be something else that is blocking any possible recovery. I know in the brain when we are not gettin what we need it reacts in the same way. The chemicals are all over the place. It trys to compensate. So even if you are taking in some good things … the other chemicals that are supposed to react with it are doing the opposite. They make more of the cortisol chemical usually. It would be the same reaction if you weren’t getting all your nutrients. Probably why my head feels odd and heavy most of the time as well. The chemical that was supposed to be made,wasn’t because the other chain reactions were messed up. So some other deeper reaction is occurring. It will continue to react in this way unless something changes. Unless it is given something else that it is missing. Our bodies wouldn’t consistently tell us something is wrong unless there was.The chemicals I described from the brain were also from a depression study. A pair of chemicals that want to do their job but can’t. So they compensate in what they can make. What could we possibly be missing? I never was good with food since I was a kid growing up. I would not know how my body got to this point except my anorexia relapses. Just like those chemicals in the brain, the body is doing. Before we can get those good nutrients and heal what is bothering us. Whatever that missing key is needs to be fixed and worked on first. What is it? A nutrient to unblock what we miss? Something in it specifically? We also need to know where the main damage is coming from. It strikes us all over but where is it starting? I can definitely agree with that it is something with the stomach, adrenal and anything that filters toxic waste. The stomach also affects nerves and it is like a second brain. And to find out why it is reacting in that way. Each step of it. What triggers what. It could break down what is causing pots, well symptoms. It is annoying to find these answers but it will provide management and/or a cure. Well before I stay up all night(getting overwhelmed with finding a answer) I need to rest. My email is [email protected] if you have any updates on this subject or if you want to put information you found together. It would help if we could all work together. Any illness is nasty. But it is extremely difficult when there isn’t enough good doctors and answers. Did I mention money? The best compass we have is how our own bodies react. Tests are still good to rule out anything. When it comes to underlying problems.. you’re almost on your own. I’m really getting into a all health professional. That looks at everything. Which wouldn’t be a bad idea but I will still do my own research.
Emily
Thank you for your explanation.
Have you got any specific advice for those of us who have already exhausted their adrenal glands?
I have Addison’s disease. I have had previously undiagnosed a POTs episodes following Addisons’s crises but I have now had ongoing POTs for the last 12 mths. I was diagnosed with hyperaderdrenic POTs but unlike description of episodes, my palpitations can be ongoing rather than episodic and do not always resolve when lying down. Turning over in bed causes my heart rate to increase by more than 30 bpm.
I already take Florinef for Addisons. I take Xanax for a different condition but cannot tolerate any SSRIs. I eat mostly gluten and dairy free.
I have not been able to work for the last 12 mths and would love some advice on changes I could make that may help me get back some normalcy in my life
Hi Sharon,
Your experience sounds a lot like mine, but my Addisons was short lived. I had an adrenal crisis because of a reaction to a cortisone shot. It took 7 months for me to recover from that and I was still not better. Then came the diagnosis of POTS It has been over 2 years since I worked and was active. I wish I could be but my body won’t let me. I am on Fludrocortisone daily and already had an ablation for my terrible tachycardias. I still get some though so not sure if it is the POTS doing it or the ablation failed.
I also get the increased heart rate when turning over in bed. But it also happens when I first lay down. I have tried a lot of things but so far nothing has made me consistently be able to be upright. I have some good periods but then after them I seem to do badly for a while. I have just ordered compression tights to see if they help the abdominal blood pooling that I believe I get since I have BP trouble after eating. Maybe they will be better than just stockings? Have you tried compression tights or stockings?
It’s soooo frustrating to go from a working, active 4x a week person to a lump on the couch! At least I have taken up quilting to help keep me busy but some days that’s too much.
I hope you find some relief. If you find something good….pass it on!
Hi Sharon,
I exhausted my adrenals five years ago. I was referred to a naturalist doctor who ordered a saliva test confirming my low cortisol. I went from nonfunctional to functional in about a year. I am almost fully recovered at five years. It is important to have the saliva cortisol test to confirm low or high cortisol so you use the correct product. Best wishes to you.
What did you take or do to heal your adrenals Angie?
My daughter has pots since xmas through a lot of reading and trial and error things we found yes you have to drink more but you have to filter ur water and add electrolite drops to water as she found she was having meds eating salt but normal water was flushing salt out we also found you can now buy a drink called the banana bag she has this in afternoon and helps her get through rest of day she still has bad days but there days now not weeks
Thank you so much for this info.. I have taken many supplements and this may be why I get so much tachycardia.
Emily – dude; where did you get your medical degree because you just explained my body cycle, thank you!!!!!! Thanks for explaining what happens to me. I’ve been on a beta blocker for years so my tachycardia has been masked for a long time unless I’m off of it for 48 hours or so and then I’m really feeling it and looking for a dose. Thanks again and I hope to keep finding out the mysteries to my illness to see what is causing me to be so sick.
Emily
After all of that etiology of POTS, what kind of diet do you recommend and what health professionals seem to understand the diagnosis the best?
I have a 13 y/o daughter struggling with migraines and stomach pain with intermittent dizziness for the past year and a half. last week they just started noticing her tachycardia and generally low BP after me telling them that for months(I have been taking her BP and pulse at home).Her condition seems to be worsening so we started fludrocortisone and a higher salt diet 2 days ago. heading to a cardiologist who specializes in POTS.
wondering if you think a more eastern oriented/functional Dr would help find the CAUSE of the tacky and Low BP through more intense allergy tests and bloodwork?
I have a 16 yr old daughter with same symptoms, also fatigue. Have you received any other information.
Not everyone with pots had the same symptoms! I am one who has pots and was diagnosed just recently. I’m still learning about it and I’ve cut down on carbs but it don’t matter what I do my heart still goes crazy while standing my heart rate goes to 120 and up. Iv treatments don’t work they only work for one day and I can’t take the meds as for my body rejects them! And as for the shock part of it system just having this disorder puts ur body through hell. Any ideas?
Thank you very much for sharing this information. I am new to this and see I have a lot of work to do. Your info has given me a little hope so thanks again.
Kindest Regards
Jeff
Emily, how do you stop the cycle then? Are you saying not to take vitamins?
Thank you Emily for this information. I am taking my laptop up to my daughter who is in bed, unable to move because of her POTS, and have her read this. Looks like we need to make some serious dietary changes – it would benefit all of us!
I am the same way I am in a wheel chair. And I am a mother of 3.
Is there such a thing as too much salt for a POTS patient?
The salt links don’t work! Any one have good ones? I am struggling to be able to eat enough sodium.
Get advise from your doc as to how much, but these are what my daughter uses, thermotabs.
I want to reply to this only to tell everyone that the very first medication that doctors with knowledge of POTS would and should give you is Adderall, I was misdiagnosed for over 4 years, finally I brought in my own paperwork i had researched and printed out, and finally I was diagnosed with POTS, I had an eptopic pregnancy that ruptured and I didn’t know about it for a few months, I should have died, but my heart started to pump faster and sent all of my blood down to my woman parts saving my life, however doing so it bypassed the path to my brain, and has stayed on that path since, my brain is being slowly suffocated because the little blood that does make it there doesn’t have enough oxygen for what a brain requires, my cardiologist told me that it’s like having a brain injury that will slowly get worse. I try to read and do sudoku puzzles every day to exercise and slow the inevitable damage to my brain. My doctors and cardiologist had never heard of POTS before me, so I have to be my own advocate most of the time, and I brought paperwork about POTS and adderall to my MD, and Cardiologist, both researched and decided to prescribe it too me, I mean what could it hurt, they had already given me every med under the sun from all of the misdiagnoses I had been diagnosed with, I did contact a lawyer who told me if it hadn’t been past four years of my original doctors apts about all of my symptoms that I would have owned two hospitals, I was frustrated, but POTS isn’t widely known about or studied. I encourage anyone with POTS to research and ask for Adderall, it took away a couple of the pills I was taking daily, plus almost completely eliminated brain fog, it raised your blood pressure, it increases serotonin production in your brain, but most of all it gives you the energy you need to get out of bed and function. It gave me my life back, its not a cure and in no way is my life ever going to be normal again, but it may have saved my life. I hope this helps anyone suffering with the miserable “syndrome” we have in common, and may our “syndrome” be more recognized and widely known, I’m sick of not looking sick so people think that I am not sick, when in fact I and you are fighting a battle that will never stand down, it effects every part of our lives, from eating, sleeping, waking up, working, spending time with our loved ones, and a lot of times just taking a shower or making a meal. I pray that everyone finds out the cause, in my case, unless I get hit in the head to the point where my brain bleeds, my body will never fully remember that blood path that is so important to every part of our every day functions, my neurological system is no longer mine, and the things are body is suppose to do with out us making it, like digestion, or merely holding a cup without twitching out and dropping it is no longer in our control. I hope we all can have a better day today than we did yesterday, and our days only get better. Smile through the hard days, but LIVE through the good days. POTS is not the end, only the beginning of the world seeing how strong, and what fighters we are!! God bless, and live well
my daughters specialist did blood test to see if she need adderall or betablocker….. she needed betablocker.
I’ve had POTS now for close to 10 years and it seems to be getting worse by the year I’m tired constantly I exercise I’m a vegetarian I don’t drink alcohol I don’t smoke I’ve never done drugs I just wish there was something I could do or take to get more energy
Banana bag drink helps my daughter
What drink do you mix the banana bag in? I ordered some but because of my severe nausea, the smell makes me gag everytime I try to drink it. (I mix it with water) also, the few times I have had it, it went right through me.
Make sure your B12 levels are good, the methycobalamin type doesn’t require any digestion, as it gets absorbed through the skin in the mouth. Good luck!
My daughter has had symptoms of POTS for almost a year. She was diagnosed two months ago at the Mayo Clinic in Scottsdale AZ. The Mayo Clinic is doing research on this syndrome. It seems to me that the nervous system needs help to facilitate the healing of the system. Is that through nutrients, supplements? I hope not synthesized drugs. I will look up Adderal but I also read about 5THP, which is said to help with making serotonin in the brain.
I just wanted to jump in and say that POTS is a dysfunction in the autonomic nervous system (ANS). Because the ANS controls the automatic functions in the body, including stress response, heart rate, BP, and so many other things, it effects everybody differently. While it is hard to always determine the exact cause, there have been links to head injury and illness. I believe there may be more, but those are the ones I can think of right now. A lot more research is needed before it is easier to pinpoint the causes, heck, most doctors don’t know what it is so that may be the first step. I agree that diet is important, and if a change in diet is all it takes to resolve an individuals symptoms that is fantastic; however, diet alone really is only one part of treatment. To better manage my POTS, because I could not even eat due to its influence on digestion, my doctor started me on a diet similar to this article. It involves no gluten or dairy and is high protein, low carb. Initially, I eliminated all grain. With this, I learned soy also bothered me and that I could tolerate rice and a small amount of corn. The most important thing is to listen to your body. If you are craving something, there is a good chance that you need it. I went so low carb initially, that I ended up with low potassium. I was craving potatoes and rice, but since they were high in carbs I did not eat them. It took a lot of experimentation, and despite being on this diet plan for almost a year I am still finding things that I tolerate well and things that I do not tolerate at all.
I was diagnosed with POTS after having 2 light heart attacks, I also have sinus tachycardia and SVT’S. After several attempts of different meds my body wasn’t adjusting due to low blood pressure. I’ve been battling this since Feb 2016 and after several procedures, all the testing to see if I did have pots, several ambulance rides due to being completely unresponsive my electrophysiologist & the autonomic clinic docs decided to attempt a medication called CORLANOR I have been on 5mg 2 times a day since Nov 2016 and I am here to tell you PLEASE ask your doctor about this medication. It has helped me start living a normal life again…not what used to be my normal but the best normal I can have. I’m walking 2 miles a day, doing upper body excercise, working again, and feel like getting out of bed. Now with that being said, I still have flare ups, and bad days, but they aren’t nothing like before. The CORLANOR is proven for chronic heart failure, that’s what it’s used for. But it does help also with pots and I’m.proof of it. I can’t take the midrodin, my body goes hayware with it. But I’m on dialtiazam and xanex along with the corlanor and a 1 mg salt tablet daily. I hope this helps and I am so glad I have found this group.
Thank you so very much for posting this. I believe I have Pots, but no Doctor ever diagnosed me with it. I have been suffering for over 10 years. The last Doctor told me that Pots did not exist. And he did not think that I was Neurotic ????
So then I was recently on vacation in Germany ?? and ended up in the Hospital because of my Tachycardia when standing. The Cardiologist over there took my input seriously and prescribed me Corlander 5 mg twice a day. This medication has made a big difference in my life over the last month. I can only hope and pray that Doctors here in America will be more open to this diagnosis and that people like us do not have to suffer no more for decades. The key is also to educate one self. Listen to ones body and be very proactive in ones care. Thank you again for posting this important info!!!!! Good health and happiness your way ?
Sorry, Corlanor!!
I started on Corlanor for my POTS too. I take Toprol and Fludricortisone as well. The Corlanor has been GREAT!! I still have flare ups but nothing like before. I know if I get run down and don’t drink enough fluids I will feel like I’m going to hit the floor. I get dizzy but mine is feeling like things are moving when they are not and it messes with my balance. My brain feels like it is jello sloshing around in my skull and I get vertigo and severe nausea when I have a flare up. It’s very scary. I just hope they figure out what causes this. There are SO many people who have this and are misdiagnosed or not enough is known to help. My cardiologist is my hero because I’ve been dealing with POTS for 15+ years and the Corlanor has worked best for me. I am on 5mg and take a half tablet twice a day. The only negative thing I can say about it is there are a lot of severe drug interactions that can literally slow your heart down enough and stop it. SO you and your doctor have to be careful of what medicines are precribed. Good luck to all with getting some relief and I will continually hope there will be a cure or at least a cause of this aggravating syndrome!
I had gone to a specialized cardiologist to be evaluated for POTS. He decided to start with a month long heart monitor and as a result diagnosed me with SVT, vasal vagus reaction?, probable POTS. Wanted to start me on Flecanif (?) for the palpitations and come back in a few months. Meanwhile I am already on a beta blocker, recently diagnosed with mcas, and brand new pcp says not to go on that drug. New pçp wants me to stay with a local cardiologist so he has assess to my records etc. An allergist was working with me before the new pcp and was most kindly allowing me to trial medications for the mcas. I landed on Ativan, Adderall and Primatene àlong with usual other mcas med and this is the closest to normal I have felt in many years! Still on the beta blocker to boot. I feel I could drop Primatene if new pcp would agree to increase the Adderall which he sadly will not. This is all such a long story as I’m sure you all have long stories as well. Despite having a new pcp it seems I do not have a voice ànd that I am not being heard. I feel to find out what is all going out with me ànd to use what works. Right now having some nerve problems along with what I believe is a viral bronchitis that is causing me to have steady crackling in my lungs when I lay down. Feel the mcas is under control, I think? Will be having an EMG test this month concerning nerve issues. Just feeling an bit lost and caught up in a tangled mess if all of this, wanting help to sort it all out. No idea what to do about the crackling in my lungs or if I dare go to the doctor.. Reading this and all your comments has given me hope plus ideas on what to eat. I have so much has more to say but my one hand may have carpal tunnel and is throwing fits about this typing. God bless you all, I felt I had friends here to talk to at 4:23 a.m. when I could not sleep due to the lung crackling. Thinking I for sure need to find out if I do have POTS in any case and that is on my list of things to do.
I am in stages 3 and beyond with Hyper-adrenergic POTS. The diet recommendations are different with this type. Does anybody have any suggestions with this type of POTS?
Can you tell me how you got diagnosed, and the tests for each type of pots. I have had no diagnosis but know that i have this, and need to have something to bring to a doctor to ask for. So far I have had a holter monitor, and attempted stress test, the doc says nothing shows when i indicate symptoms. I was unable to do much on the treadmill for the stress test, he hasnt even bothered to call with a result, if any. He is supposed to be one of the better cardio docs around. I asked about pots, he says he would refer me to a neurologist, who does not use medication , but exercise, as treatment. I am not able to exercise , other than small attempts at cooking, also physical therapy arm exercises for a bad shoulder problem. I’m at a loss. Any help appreciated. I have already increased water and salt, and am vegan, so not many dietary changes left to try.
They use a tilt table test to diagnose my POTS. Passed out within 45 seconds of the test starting.
My daughter was diagnosed with POTS and Ehler Danlos after moving to D.C. and finding immediately doctors who were well informed. After twenty plus years of being told her symptoms were “in her head” in Florida, she finally has been diagnosed. One doctor near D.C. who has done much research on POTS has a 20 month waiting period to see him. DNA validation can be done for EDS …….many differents genes contribute to hypermobility syndrome that can involve the vascular system and thus overlap with POTS.
Which doctor in DC? This would be extremely helpful to know…thank you!
Hello, I am a caregiver for my son who was diagnosed with POTS in July 2017. For 7 months previous to the POTS diagnosis, he was misdiagnosed with anxiety disorder–for which he went to a therapist, was put on a Benzo for 3 months and several different SSRI’s. He had begged for a tilt test twice. The tilt test was given by the office nurse (no tilt table) and was very inaccurate (she did not even time it correctly). I am writing this to let people know that you have TO FIGHT FOR YOUR RIGHTS as a patient. We have had no “care team” follow up–even though his health system markets themselves as being great in this regard. The doctor who finally diagnosed his POTS was a great diagnostician. The follow up has not happened so far. To date my son is trying the natural route (due to his horrible experience with the anxiety drug that were prescribed to him) usingthe Dallas Protocol using a recumbent bike. Currently he is up to 27 minutes–and is now at a plateau. We are looking for a physical therapist that can help him develop a personalized plan for developing his cardio tolerance. Any suggestions? Any suggestions about time of day or diet that works while developing the tolerance for exercise? Blessings and progress to all who suffer with POTS. As a caregiver, I am seeking therapy myself. It is just the two of us and this is a very isolating syndrome. If anyone has questions about our experience in Chicago, please ask away. Any advice about the protocol would be helpful–was it used in combination with midodrine?
I’ve just been diagnosed with dysautonomia… I’m not sure what to do. I went to the ER last night because of the light-headedness, headaches, nausea and the hot flashes. But also lately I’ve been getting abnormally cold, whether it’s related to not. from the ER they took me to the cardiologist. and then they told me about dysautonomia. I have done research on what it is and everything. but I am still so confused on what to do and how to cope with it. Can someone please help me out with this? The headaches are becoming unbearable. The light-headedness is too much. I NEED coping skills.
I am sitting here feeling very helpless. They need to make a specific diet plan for those with pots .I think the most frustrating part of all of this is that the medical professionals seem to know little or nothing about this waste basket diagnosis. I’ve actually had doctors tell me a resting heart rate of 135 is ok, and I was released from the hospital. The doctor actually looked at me and said, “you should be fine right,? “that heart rate won’t hurt you? I could have screamed at that point. The bottom line is medical professionals know next to nothing about pots. This is a shame, a disgrace, and an ongoing frustration for the patients. If you can’t count on the medical professionals, who can you count on?
all I seem to hear is, this might help, or this may or may not help, there is no sound proof evidence. For me, this is debilitating. I’ve lost my job, my fiancé, and so much more because of this. I just wish there was concrete evidence out there that could bring some sense of relief and normalcy. Living with this is a never ending battle, and no one knows how to even remotely fix it.
I am so sorry. I was basically thrown put of my cardiologist office a couple of weeks ago because I was too young to be there and “My heart is fine” even though electrocardiogram and halter monitor showed that my heart wasn’t right. I asked him if my heart just does funny stuff sometimes and he told me I felt nothing because nothing was wrong and to come back when I’m 80. I feel so hopeless right now because I know I’m not right.
Hi all. I recently got diagnosed with POTS.
While I’m actually “ok” with my initial diagnosis, as it gave me an answer, I’m suffering from a lot of anxiety/panic attacks due to fear of the unknown and escalated symptoms.
Is there a support group for people dealing with POTS?
Hi Everyone.
I agree we need a support group or Facebook page for people with POTS. So we can share what works and support each other.
Do you mean one teaspoon of salt is 2-2.5 g sodium, instead of one tablespoon?
Dysautonomia International has state support FaceBook group pages. I belong to Wisconsin’s. Also Potsabilities is another FaceBook group. They have helped me arm ourselves with a lot of info and questions for doctors!
My daughter has struggled with difficulty breathing for 6+ years. We have been to over 50 different Drs (including Mayo Clinic) and no one could figure out what was going on. Finally, someone was smart enough to have her do the Tilt Table test & she was diagnosed with POTS! If you have the symptoms, you HAVE to find a Dr that specializes in this, as so many of them are ignorant of what it is and just want to say that you are depressed or have anxiety or just plain don’t care enough to figure it out! PLEASE take some time & go to this website. It will explain a lot & give you some great resources for finding the right physician! https://thedysautonomiaproject.org/
Kelli, My daughter has also been diagnosed with Pots, mcas and eds. Her very worse symptom in air hunger. Have you found any treatment that you could share. She is bedridden and getting worse every day. Your help would be much appreciated. Linda my email address is [email protected]. Blessings to you both.
Hi. There is help out there. Please go to potscare.com and call Dr. Driscoll. She had pots for 10 years, as did her children. She has EDS. She is amazing. She is a doctor, but once she got pots she had to quit her practice and she was wheelchair bound for years. She researched and researched and found answers. She is so smart and does not just treat symptoms. She gets to the root of your issues. I am on the road to recovery because of her. There is hope and help. I would highly suggest you call her right aways. You can get the number from the website. She is in Texas. Tell her Cassandra sent you. Don’t give up. Your daughter can get well.!!!!!
Cassandra Meierhofer [email protected]
Dear Kelli, my daughter also has pots, mcas and eds. She has suffered with her worse symptom of air hunger for 6 years. She is bedridden and has been doing worse every day. Have you found any treatment to help your daughter. Thank you and many blessings to you both Linda [email protected]
you should see a genetics specialist to see if you have EDS or Hypermoblity spectrum disorder.
I’m so glad to see somewhere that people are actively talking about POTS. I have a few questions, this is all newer to me. I ended up with 2 pulmonary embolisms and when it was all said and done and I now have pots. Some of the symptoms are the same as clots so I’m always scared I have another. Besides the tachycardia upon standing and the “normal” symptoms, does anyone have dizziness that comes and goes without standing? Might last a few minutes to days then just goes away? Does anyone have issues with out of nowhere getting really hot and sweating then going right back to normal? Pains in the lung and back area, more specific right under the breast’s?
A healthy diet may contain fruits, vegetables, and whole grains, and includes little to no processed food and sweetened beverages. The requirements for a healthy diet can be met from a variety of plant-based and animal-based foods…