Postural Tachycardia Syndrome

Question: Does anyone out there have Postural Orthostatic tachycardia syndrome? Hey I'm 18 and have POTS syndrome. It has limited my life so much. So if anyone else out here has it and can offer advise maybe some meds that you are on that helped. Or just some encouraging words, I would greatly appreciate it.

Answer: I find the videos on YouTube helpful. I have put them together along with other videos on http://www.potsinfo.com. It is a plain site designed to go into other sites.

Question: Does anyone know how to treat Postural orthostatic tachycardia syndrome? (irregular and very fast heartbeat causing blackouts) I've been diagnosed but would like to know if there are any easy solutions :)

Answer: Postural tachycardia syndrome (POTS), characterized by fast heart beats when you stand up. Heart rate increase of ≥30 bpm with prolonged standing (5-30 minutes. Many have a low blood volume. Hence correction of blood volume by increasing intake of fluids and salt is useful. 2 -2.5 litres of water and 3 grams of common salt per day may be useful. Avoid aggravating factors like dehydration and extreme heat. Elastic stockings are also useful. If one has been through prolonged bedrest, symptoms will gradually improve as you recondition yourself to upright posture.

Question: Could i have POTS (Postural Orthostatic Tachycardia Syndrome) ? I just researched POTS and i have all the symptoms like severe fatigue, feeling faint, headaches, weight loss, stomach pain, loss of appetite, nausea, weakness, low blood pressure when standing and food intolerances (im now intollerant to fatty or greasy food or fruit juice). Am i likely to have Postural Orthostatic Tachycardia Syndrome?

Answer: POTS is a condition of dysautonomia, and more specifically, orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Dysautonomia is any disease or malfunction of the autonomic nervous system. It means that not only the nerves that controls the digestive system that would be affected, but also those of other systems - unless of course you have done some diagnostic test or something that caused too much pressure or some other damage to the nerves of your digestive system and as a case I had some years ago. And even then, it would not just be the digestive system that would be affected. Other systems would be involved. While the symptoms of your question are associated with POTS, they are just a few of the total symptoms associated with this Syndrome. Frankly when comparing your short list with the long list of symptoms associated with POTS, I do not think you have this disease. In any case since this disease takes a long time to fully develop and is mostly being misdiagnosed for something else, it would be good to discus it with your doctor.

Question: What causes POTS Disease (Postural Orthostatic Tachycardia Syndrome)? My daughter was diagnosed with this. She is only 11. What are signs and symptons and what causes it.

Answer: I have this and it's definitely not fun and I'm an adult. After battling dizzy spells for three years now, it hasn't gotten any better. I'm guessing it's not hereditary because I never had it up until a whiplash injury I sustained in 2004. I believe the main symptoms of this is severe dizzy spells which syncope episodes will follow. My POTS gets aggrivated by constant movement, standing up too fast, loud unexpected noises, elevators, and escalators. All of these will result in dizzy spells which when it gets intense it causes me to pass out for a few minutes(syncope episodes). The reason for the dizzy spells is because of the quick increase or decrease in the heart rate. At one point my heart rate was 80/60 or 60/80...I can never get that right. If I'm able to sit still or lay down, it will get my heart rate back to normal within 30 minutes to a hour or more. The reason loud noise triggers my POTS is because of the way the heart responds to unexpected things. Walking normally also triggers my dizzy spells so this is why I have to sit as much as possible. You may not want to do this with your daughter because her muscles can become weak very quick like mine did back in 2005. The constant dizzy spells makes me very sleepy which might make your daughter. It all has to do with the way the heart works during any kind of activity. They say medications won't cure POTS but it will help to keep it from occuring too much. Unfortunately for me, I'm on Effexor. Stay away from Effexor, Topamax, or other anti depressant medications. These will make the symptoms worse. Topamax made me even dizzier. I was dizzy all day each time I took it. Effexor greatly increased my heart rate. It caused me to be severly sleepy and it just made me lethargic. I can't get a doctor to prescribe me the meds that's actually for what I have. If your daughter's not taking any meds yet, ask your doctor about several meds. Flourinef helps but it takes away the potassium. Take suppliments to keep from losing potassium. Proamitine(Midrodrine) is another along with Celexa and Pyridostigmine Bromide. Celexa should start off at .5 mg. The Celexa and Pyridostigmine Bromide doesn't have those huge side effects and it's made to aid people who have a low tolerance for meds like me. Also see the sources below to read more about POTS.

Question: Can POTS (Postural Orthostatic Tachycardia Syndrome) sympotoms keep getting worse if not treatedd? i have had pots for four years (just diagnosed) can these symtoms get worse because mine keep gettin worse after standing or doing any excersise for long periods of timmee. please answer!!!

Answer: of course. standing or doing extensive exercising will make POTS symptoms so much worse. are you on medication? that will definitely help. try a beta blocker. they won't really get worse if you go untreated. medications will only help you feel a bit better, they won't cure you. only time can potentially cure a person with POTS. i hope you feel better soon!

Question: postural orthostatic tachycardia syndrome...? P.O.T.S (postural orthostatic tachycardia syndrome) was wondering does anyone here have this syndrome and if so could they give advice on how to deal with it... Thanks! x

Answer: There is an article on Postural orthostatic tachycardia syndrome at: http://www.ipej.org/0602/raj.htm

Question: Has anyone heard of Postural Orthostatic Tachycardia Syndrome? I have "POTS" and i was hoping someone else who has it or knows about can tell me how to help my symptoms. Thanks!

Answer: POTS is defined as a minimum 30 bpm acceleration of heart rate from the supine to the standing position within 10 minutes or less, with a peak heart rate reaching at least 120 bpm. Some patients have heart rates that go all the way up to 150 bpm and beyond. During tilt table testing, some POTS patients have large drops in blood pressure and pass out (syncope), while other patients have only relatively shallow drops in blood pressure. A small percentage of POTS patients have no drop in blood pressure at all. POTS is diagnosed on the basis of heart rate increase and heart waveform signature revealed by electrocardiogram, not on the basis of a drop in blood pressure, as is the case with orthostatic hypotension and neurally mediated hypotension (NMH). Neurally mediated hypotension is commonly associated with POTS, but having NMH is not a prerequisite for a diagnosis of POTS. The secondary symptoms of POTS vary significantly from case to case. The most commonly reported symptoms are listed below. The length of time POTS patients can comfortably stand varies widely from case to case. Patients may become dizzy, lightheaded, and develop chest and heart pain from standing beyond their limit. Blood pooling in the legs and splanchnic bed (abdomen) may occur, which is felt in the same way you feel water fills your mouth when you get a drink. Shortness of breath, blurry vision, tingling in the legs, sweating, and feelings of heat from increased adrenaline production are common symptoms of orthostatic stress. Some patients pass out frequently, which is dangerous as well as uncomfortable. Many patients experience spells of supine or standing vertigo, but this symptom is dependent on the root cause of the POTS. Remember that POTS itself in not a specific disease like polio, but rather a symptom and a syndrome (a collection of symptoms). The current prevailing theory is that the heart pain associated with POTS is predominately non-ischemic, but further research may alter this perception. It is believed the left sided heart pain so common among POTS sufferers is due to differences in heart chamber pressures, abnormal heart wall motions, and/or nerve damage. It is not related to common angina which is usually caused by blocked arteries cutting off the supply of blood to the heart. While uncomfortable and debilitating, this left sided heart pain is not believed to be immediately life threatening. On occasion, patients may also have the strange sensation that their lungs are filled with glue. This uncomfortable feeling is often misinterpreted as being evidence of a lung infection, while in most cases it is a cardiovascular symptom. With POTS and NMH you become lightheaded and weak even before you get a measured crash in blood pressure because the small blood vessels in the brain paradoxically constrict when you are under orthostatic stress. This cerebral vasoconstriction cuts off the blood supply to brain cells while veins in the legs and splanchnic bed are dilated and pooling blood away from your heart. With inadequate filling of the heart's left ventricle and abnormal function of the alpha and beta adrenergic systems, it is no wonder that strange and irregular heart beats (palpitations) are a universal symptom of POTS. These are often referred to as ectopic heartbeats, with frequent premature heartbeats the most common aberration reported. POTS often generates a temporary rise in blood pressure immediately upon standing due to the rapid acceleration of heart rate. Tachycardia is the body’s defense mechanism against a lack of sufficient venous blood returned to the heart. Blood vessels, particularly veins, can become unnaturally dilated, causing blood pooling in the legs and splanchnic bed (abdomen). Thus the heart must beat more times in a minute to make up for the reduced blood volume transferred by each beat. If a POTS patient stands up too suddenly, there may be so little blood in the heart that it may collapse upon itself, causing very painful heartbeats. Patients often have measurably low standing pulse pressure, which can be an indicator of venous pooling. Frequent urination is a common symptom of POTS, NMH, and severe cases of CFS. This problem is sometimes misdiagnosed as diabetes insipidus, which is a disease caused by reduced production of a pituitary hormone called vasopressin. Some POTS patients develop a diabetes insipidus like syndrome which is believed to be caused by somewhat reduced vasopressin output, low blood volume, and disruption of the alpha adrenergic system, which helps the kidneys retain water and sodium. Reactive hypoglycemia is a common problem for both POTS and CFS patients, and occurs through a complex series of neural and hormonal interactions which are not yet fully understood. The traditional definition of hypoglycemia is an abnormal lowering of blood sugar levels after the body overreacts to carbohydrates with excessive insulin production. Researchers now understand that this lowering of blood sugar levels is not the only cause of symptoms. Recent studies show that when patients with reactive hypoglycemia eat carbohydrates, which cause a sudden increase in blood glucose levels, their bodies abnormally produce excessive amounts of adrenaline and other stress hormones. These stress hormones themselves cause many negative symptoms of their own, in addition to the eventual crash in blood glucose levels due to excessive reactive insulin production. Most patients with POTS have difficulty sleeping, which may result from a number of factors, including abnormally high adrenaline levels caused by increased orthostatic stress (the stress of standing). Central sleep apnea is a common problem for people with POTS, which in some cases may be due to damage to the medulla, which controls important cardiac and respiratory functions. Central sleep apnea causes breathing to temporarily stop while sleeping. Low grade fevers, mild chills, and general flu like symptoms are common with POTS. This may be explained by a neurologically based loss of control of basic autonomic regulatory systems, an overactive immune system, or abnormally high adrenaline levels effecting body heat production. Many patients have positive anti-nuclear antibody tests (ANA test), which some doctors say is due to high adrenaline levels activating the immune system. Other doctors suggest positive ANA tests may be due to an autoimmune disorder damaging nerve cells. Patients are left in confusion as to which theory to believe. Chronic fatigue and weakness are common problems for POTS sufferers. Those who have pure POTS, without CFS or significant immune system involvement, generally feel better and have greater postural tolerance despite tachycardia. Many POTS patients have common allergies, uncommon food allergies, and are highly drug and chemical sensitive. Many POTS and CFS patients experience severe night sweats. Nausea, bloating, and sore intestines are a frequent complaint. The nausea can usually be eliminated by not stressing yourself beyond your capabilities. Bloating is caused by low motility in the intestines, a byproduct of nerve damage. Patients often develop irritable bowel syndrome, which leaves the intestines feeling raw and tender. Difficulty swallowing (dysphagia - pronounced dis-FAY-jee-uh) is also a frequently reported problem. Numbness in palms and soles is a common symptom of POTS. Legs, arms, and hands are often totally numb upon awakening from sleep. Upper extremity somatosensory evoked potential studies are usually normal in POTS and CFS patients, but this is not always the case. Unusual coldness of the hands is also common and is referred to as acral coldness. Patients frequently experience sporadic itchiness, burning and tingling sensations all over the body, especially at night. Some patients may also have dramatically reduced sweating, which can be tested for through a thermoregulatory sweat test. Most POTS patients have poor balance, which may be caused by decreased blood flow to the brain and other disturbances in the vestibular system. The patent's root neurological damage may also cause balance problems directly as well as causing the debilitating symptom of orthostatic intolerance. Patients are often unable to pass a drunk test by walking with one foot placed directly in front of the other. An abnormal gait is common. Patients may walk with legs wide apart and feet flared out to the sides as an instinctive adaptive response to increase their stability. Eye pain is another common problem, as is a feeling of pressure behind the eyes. Patients can become so weak that their eye muscles are easily strained and focusing is difficult. Many POTS and CFS patients see tiny little black dots floating in front of their eyes. This is a problem of the fluid in the eyes which occurs naturally with age, but which can be made dramatically worse by the onset of CFS or POTS. Supine blood pressure readings are usually normal or below normal in POTS patients. This is in sharp contrast to multiple system atrophy (Shy-Drager syndrome), idiopathic orthostatic hypotension (Bradbury-Eggleston syndrome), and other forms of central autonomic failure typified by low standing blood pressure and high supine blood pressure. Lack of supine hypertension (high blood pressure when lying down) is usually a sign you do not suffer from the classic forms of central autonomic failure. Most POTS patients will only have a few of the symptoms listed here, while others will have unique symptoms all their own. A poor memory is a major symptom of POTS, and many patients will have a difficult time just remembering their own symptoms while conversing with doctors. The total damage to the autonomic nervous system POTS sufferers experience, called dysautonomia, causes what Dr. David Robertson of Vanderbilt University refers to as “mild autonomic abnormalities.� These symptoms, such as frequent urination and reactive hypoglycemia, are not life threatening, but they are quality of life destroying. People who do not have problems with low blood pressure have a difficult time understanding the concept of orthostatic stress. They fail to realize that blood pressure is as basic and essential a bodily function as breathing. How would you feel if your breathing were constricted for even one minute? Low blood pressure can cause an enormous amount of symptoms and suffering, but those who don’t have it often miss that fundamental point. Some patients with POTS have such a damaged regulatory system that they may get paradoxical wild swings in blood pressure from below 50 to over 200. Complexly, POTS can be a low and high blood pressure problem combined. http://home.att.net/~potsweb/POTS.html

Question: Does anyone know anything about postural orthostatic tachycardia syndrome (POTS)? My 16 year old son has this for 2 years now.

Answer: I don't know about it, but here's a page from Wiki - http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

Question: What are the symptoms of POTS syndrome (Postural Orthostatic Tachycardia Syndrome)? ? I have been getting these weird things happening to me for the last 5 years, they are dizzy spell things but its really hard to explain what happens to me, Im only 15 and my specialest has done so many tests and they all come back fine, he put me on some medication to try yesterday. He thinks it could be POTS. Im really sick of being dizzy and light headed because it hold me back from doing so many things in my life. PLEASE HELP ME. Thankyou.

Answer: Postural tachycardia syndrome (POTS) is a disorder characterized by a pulse rate that is too fast when the patient stands. Symptoms include rapid heartbeat, lightheadedness with prolonged standing, headache, chronic fatigue, chest pain, and other nonspecific complaints. Causes of POTS usually are not identified in individual patients. Reversible causes such as low blood volume should be ruled out. This sounds dumb but has he checked your blood pressure and checked to see if you're anemic? Is your heart rate increasing when you stand up? That is very different than feeling dizzy. Sounds a little like he/she is just fishing for an answer. Make sure he has done the proper tests and can show you that your heart rate is increasing when you stand up before taking the medication. Good Luck

Question: does anyone know of a cure to POTS(postural orthostatic tachycardia syndrome)? POTS is a a kind of Dysautonomia(autonomic nervous system disorder) so if you know of any cure other types of Dysautonomia, I would also be interested to hear what you have to say...

Answer: Hi, This is some information for you. I hope it can be of some help. Treatment of POTS depends upon the severity of the symptoms. Individuals with the disorder are usually advised to increase their fluid and salt intake. Body stockings may provide some relief. Drug therapy, with fludrocortisone, beta-blockers, midodrine, or clonidine, can be beneficial. Physical exercise, especially calf muscle resistance training, also may help. Some patients may require and benefit from insertion of a cardiac pacemaker. Below are some places you can contact for more treatment options. National Dysautonomia Research Foundation P.O. Box 301 Suite 160 Red Wing, MN 55066 ndrf@ndrf.org http://www.ndrf.org Tel: 651-267-0525 Fax: 651-267-0524 Dysautonomia Youth Network of America, Inc. 1301 Greengate Court Waldorf, MD 20601 info@dynakids.org http://www.dynakids.org Tel: 301-705-6995 Fax: 301-638-DYNA Best of luck to you! Take Care!

Question: Can anyone explain postural tachycardia syndrome in basic terms please..? I have ehlers-danlos syndrome but have been diagnosed with postural tachycardia syndrome,I have been looking it up but get rather confused with some of the medicl terminology...can anyone help me understand it a little easier please...thank you

Answer: When we change from a reclining or sitting position to an upright or standing position, our heart rate increases and blood pressure dips. For most of us, our bodies compensate to correct this without any effort on our part. But those with POTS cannot do this. POTS is a disorder in which there is an abnormally rapid heart rate and, for some, low blood pressure when standing up (upright position). POTS is not progressive, that is, it doesn't worsen. It can be mild to severe and many people improve with treatment. Studies suggest that POTS may be passed from mother to daughter and POTS afflicts women more often than men. Now, you have also said that you Ehlers-Danlos. This is a connective tissue disorder that allows veins to dilate excessively. Ehlers-Danlos is an acknowledged cause of POTS. When veins dilate, blood volume drops. Blood pressure drops because blood volume drops. The heart work harder to compensate for the reduced volume of blood. The heart thinks "I have to move more blood! I have to fill these dilated veins!" The only way it can do this is by pumping faster.

Question: For anybody with POTS - postural orthostatic tachycardia syndrome? Do you know any good books/articles explaining not only what it is, but how it affects the person who has it. I have this syndrome, and i want to give family/friends information on it because they really don't understand. Or a book about invisible illnesses that at least mentions POTS, but also tells it through the eyes of someone who has suffered from POTS or something similar. FYI -- POTS is a form of dysautonomia (disregulation of the autonomic system)

Answer: My mom and aunt both have POTS. Just know you're not alone www.potsplace.com It is where we learned most of our information.

Question: Postural Orthostatic Tachycardia Syndrome or POTS??? ok so i have just been diagnosed with pots. i m kinda really confused about it. from what my doctor says it is bad but not that bad. what is it? should i tell my friends about it and that i have it? also would it be why i have migranes everyday? and will it ever go away? please help!

Answer: I am 16 years old and I have POTS as well. I was just diagnosed in December. I have a lot of headaches too, but if I take my medications, they are better. My doctor said that headaches are one of the main symptoms of people that have POTS, so your migraines could very well be from this! Be sure to exercise, drink lots of fluids, and increase your salt intake. If you are on medications, take them. This has helped me a lot! POTS just means that when you lie down, your body is fine, but when you have a change in posture (standing), your body doesn't know how to react. In my case, as in many, my blood pressure drops and heart rate rises. There are other symptoms associated with the syndrome but this is the main defining point. I also have horrible digestive problems associated with POTS, but I take medications for that and they are better. I have chosen not to speak with my friends about it much. It just confuses them and some people will think it is all in your head, but IT ISNT! Don't believe that. POTS is very real and you are not alone. Some friends will not understand, and that's hard to accept, but it's part of dealing with what you have. Many teenagers who are diagnosed with POTS can go off of their medications when they are in their 20s and they are fine. Some symptoms may stick around but it should get better with treatment. Good luck!

Question: Anyone been diagnosed with Postural Orthostatic Tachycardia Syndrome?...? I have been sick for some time but got worse about a month ago. I was just diagnosed with POTS two weeks ago. Just wanted to know what your experiences have been and how it has affected your daily life. Thank you

Answer: Hi! Most POTS patients get better on their own in a year or two. Hope you do. Did your doc tell you about fludrocortisone? It can help the blood pressure stay up. You'll still probably feel tired and weak and not want to do anything. You'll feel a little better if you can force yourself to exercise a bit. I know it's difficult but even a little walking helps. Of course, don't try it on your bad days. You can get info from National Dysautonomia Research Foundation. Good luck.

Question: (Postural Orthostatic Tachycardia Syndrome) POTS: Help!? I've had POTS since early March of this year. I was diagnosed in May. I have been put on a low dosage of fludrocortisone. Works a little, as I can sit upright, for the vast part of the day, although I feel kinda unsteady. I can also stand for 5 mins, without immediately keeling over, never used to be the case. My main problems now are feeling breathless when I attempt to walk, and also I feel bagged up, when only eating a little. I have chronic fatigue and vaso-vagal syncope, too. I would love to improve my quality of life enough just to fit in half an hours walk, without keeling over!! :) Any advice/ pointers would be embraced, with a wide-armed hug!! Thanks Bundles, From Cassie.

Answer: This sounds a bit more severe than the typical POTS case. POTS is usually a mild form of orthostatic hypotension. Also sounds like your syncope is likely to be related to orthostasis. If you haven't done so, you should be seen by a Neurologist - preferably one that specializes in autonomic nervous system disorders (unfortunately that's pretty subspecialized and you may need to go to a major university or settle for someone who has a particular interest in it). In addition to the medication you should have the head of your bed up on blocks (so you don't sleep completely flat), wear specialized support hose specifically made for this problem (Jobst stockings), get up slowly and let yourself equilibrate each time, liberalize fluid and salt intake, small meals, avoid hot tubs/overheating, and see if there is a physical therapy program for this problem in your area. There are other medications that could help if you aren't under control...see the specialist about that. Good luck.

Question: i am diagnosed with pots. postural orthostatic tachycardia syndrome. Anyone have or know of this diease?

Answer: yea that's what the doctors said i had. something about when i stand up sometimes i get dizzy and my blood pressure drops and my heart rate goes up. they told me to incorporate more salt and liquids in my diet, and to avoid caffeine. hope this helps!