Phil Fischer, M.D., discusses the latest research on Postural Orthostatic Tachycardia Syndrome (POTS).
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I am a 36yo female with POTS who has had 2 pacemakers and multiple hospitalitazations since 9/06. a dx. of pots was only recieved in 09. I was working full time as a nyrse going to school married with 2 children when I became “severly” ill. I was in & out of the hosp. for several months before I passed out @ work & ended up with an emergency pacemaker placement @32 yrs old. I am still struggling with this disorder but refuse to give up on getting my life back. Your site is very helpfull & inspiring. Please keep this going to let others know there is help this IS REAL not in your head or a side effect from something else. God Bless!
my doctors also said that i might need a pacemaker has that helped u? cause now iam in a wheelchair cause i cant walk cause of my heart rate..
We have received your question and it has been referred for a reply.
It is very unusual for POTS patients to need pacemakers, and having a heart rate that slow usually indicates that there is an additional problem besides “just” the POTS. We did, however, care for one young man who needed a pacemaker for a rare form of autoimmune-related POTS. He ended up recovering completely and having his pacemaker removed. Dr. Fischer
i found out that i had pots and i have tried everything accept iv saline treatment. I want to know if i would benefit from it. also i cant keep any solid food down what should i do?
Here is Dr. Phil Fischer’s response:
“This is an increasingly common question. A few people with POTS do report being helped by intravenous saline infusions. Other POTS patients have had severe side effects from saline infusions – blood clots and infections. Logically, the benefit of the infusion seems short-lived. Putting everything together, I do NOT think intravenous saline infusions are appropriate for POTS patients unless there is something else going on – like a severe infection or injury with dehydration. There are lots of reasons that POTS patients might have trouble keeping food down, and your own doctor would need to work closely with you to make sure you are getting the right treatment for your specific issues with vomiting. These are tough situations, and I hope things get better for you soon. –Phil Fischer”
this is so helpfull I recommend anyone or the caretakers to follow this site.
Is there a link between Celiacs Disease and POTS? Is there a link between Lyme Disease and POTS? My 14 year old daughter was just diagnosed with POTS and she has had Celiacs Disease for 4 years now. When she first exhibited symptoms of extreme muscle fatigue 6 months ago I suspected Lyme Disease because we had vacationed in an area known for Lyme Disease but her blood test came up negative for Lyme but I still always wonder.
I would appreciate any feed back.
Thanks for the great questions! There is no specific link between POTS and either celiac disease or Lyme disease.
But, POTS is often triggered by a febrile illness. This can be mono or Lyme or anything else. By the time the POTS is established, the original triggering infection is usually gone. I am glad that your daughter did not have evidence of Lyme disease.
Celiac disease relates to inflammation. Some people make inflammatory responses by producing antibodies against parts of their own bodies. Very rarely (less than 10% of the time), POTS patients are found to have antibodies directed against their autonomic nerve-muscle junctions. But, there does not seem to be anything more than a random connection with very rare patients having both celiac disease and POTS. Unfortunately, your daughter seems to have gotten both conditions – even though they are not likely really related.
I hope these comments help. Phil Fischer
My daughter has had Lyme Disease since she was 11 yrs old. She is now a senior in high school still suffering with symptoms similar to POTS. Do you think IV IG would be helpful for either Chronic Lyme or POTS?? Thank you!
We are checking on an answer for you.
Great question – and relevant to lots of people with similar concerns.
There are rare isolated reports of IVIG helping the unusual POTS patients with identifiable auto-antibodies. Without finding those neurologic antibodies (like the ganglionic acetylcholine receptor antibodies), it is not likely that IVIG would help.
I suspect that the Lyme infection might have triggered the POTS, but it would not be expected that Lyme would last this long or need additional treatment at this point.
Hang in there! Phil Fischer
Just because your daughter initially tested negative for Lymes does not exclude the possibility she had Lymes all along. The test for Lymes measures antibodies in the blood. In early stages of the infection, these antibodies can be at such a low level that they are undectectable by the test resulting in a false negative test result. She should have had a repeat test in 2-4 weeks after the first test just to be sure.
Lyme ,Lupus,Crohns, etc. are all symptoms of a stagnant lymphatic system. But don’t take my word for it. Get her on a high fruit, raw, vegan diet and watch her symptoms diminish. Inflammation is another word for acids that aren’t going anywhere fast. Get rid of the dairy, processed flours/grains(even the gluten free ones…still junk) meats and cooked starches. But only if you want your daughter to feel better. Nothing difficult..all the grapes, melons, green smoothies, berries etc, all day long and a big salad in the evening. Your POTS will get better too! Detoxify your body..Research fruit or water fasting, raw foods. Your body wants to be in perfect health…get out of it’s way and you can’t stop it.
My daughter was diagnosised with POTS and is in horrilbe pain from headaches and muscle and joint pain is there anything I can do to help her be more comfortable see just looks up at me and sobbs. I feel like there must be something I can do. She is on Midodrine we have increased salt and fluid intakes. I try to gently rubb her legs and head but it hurts her for me to touch her please any help.
Thank you
Candace
Thank you for your message.
Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to seek help from Mayo Clinic, please call one of our appointment offices at 800-446-2279 in Arizona, 904-953-0853 in Florida or 507-538-3270 in Minnesota. I hope this information is helpful.
My daughter was diagnosed when she was 14 she turns 15 on Friday. She has been on metoprolol. She continues to get dizzy and pass out for brief moments. Will this ever end or is she going to have to live with the dizzy and passing out on a regular basis?
Dr. Fischer says — Dizziness is very common with POTS, but medications can help – along with increased fluid and salt intake and with daily aerobic exercise. If metoprolol alone is not adequate, either an increased dose or a different additional medication might help. Treatment might not fully remove the dizziness for a while, but the passing out should be preventable. Eventually, this all should resolve. Hang in there!
CANDACE! This is by NO means a diagnosis. But if you see this, look into Ehlers Danlos Syndrome. You mention of joint and muscle pain plus skin sensitivity made me think of this (I have this and POTS.) Also because its a rare disorder, many doctors don’t know a lot about it. But its worth a try.
My 26 year old daughter also has Celiac and it looks like POTS too. She has gone to every type of doctor under the sun for years. Her Celiac is frustrating because she is asymptomatic, but she’s been on a gluten free (vegetarian) diet or 3 years. She was told that beta blockers would LOWER her blood pressure so when she was told she had vasovagal syncope, the doctor said NOT to do beta blockers. She really needs help.
What type of specialist will take her seriously and give her the appropriate treatment?
We have received your question and are checking into an answer.
I feel for you and your daughter. Often, the key to effective ongoing medical management is having a good primary care provider with whom the patient communicates well. That person can then help coordinate whatever GI and dietary care is needed for celiac disease, and he/she can also help find the right person to help with POTS. Sometimes, POTS patients work with an autonomic neurologist, and sometimes they work with a cardiologist.
Yes, beta blockers are used to lower blood pressure in patients with high blood pressure. But, beta blockers are also useful in helping peripheral blood flow so help POTS patients. Interesting, the beta blockers seem to help blood flow without causing low blood pressure when they are used for POTS. Depending on your daughter’s specific medical situation, her doctors will help decide if beta blockers are best for her (as for many with POTS and many with vasovagal syncope) or whether something like midodrine (also helpful in both conditions for many patients) would be better.
I hope these comments help. Dr. Fischer
i have p.o.t.s syndrome..iam in a wheelchair because of my heart rate..iam on a beta blocker and still not feeling better.i need a doctor who knows about p.o.t.s..every hospital i go to does not no what it is..i visited a hospital and they gave me the wrong meds and i been in and out hospitals still..iam so afraid of taking meds because iam so touchie with meds…help? i live in new jersey..no any good doctor near here.
i also have been experience.my face turning real red and i get real hot like iam burning up just in my face..my family doctor says its called flushing and its all apart of this p.o.t.s..my blood pressure has always been real low and now its running about 138 or 148..is that a safe range to be in?
We have referred your question for a reply.
POTS does indeed give flushing at times. But, the high blood pressure is not typical for POTS. The combination of flushing and higher blood pressures might stimulate your doctors to make sure there is not an excess of metanephrines (blood flow stimulators) that would be treated differently. Dr. Fischer
Your comment has been referred for a reply.
I’m sorry about your troubles, but your question brings up a couple of other points for your doctors to consider.
First, some people who are “touchy” with medications have identifiable alterations in their CYP cytochrome 450 metabolism pathways. Blood tests can help determine which medications and which doses might be most appropriate with patients with particular metabolic pathway abnormalities. This is especially for the use of POTS medications (and for anxiety and depression medications, too).
Second, one of the keys to recovery from POTS is to retrain the body – and that involves upright exercise. So, while the wheelchair can help temporarily relieve symptoms, activity is most helpful for long-term recovery.
Dr. Julian Stewart in New York does good POTS work. There are also good POTS doctors in the Baltimore and DC areas.
Phil Fischer
I’m 15 and in 2007 I started having stomach pains and acid reflux and chronic headaches and tiredness. We found out later than my stomach pains were caused by slow digestion. Then about a year ago I started getting really tired and my heart rate would raise alot when I stood up and I would get dizzy. The cardiologist I see has diagnosed me with POTS but tells me my headaches, stomach pains/slow digestion, and nerve pains aren’t linked to POTS. After some research on the internet I found that these things have been linked to POTS so I don’t really know which to believe and I was wondering if anyone had an opinion that I could benefit from.
We have received your question and are checking for an answer.
Great question!
Lots of things can cause the symptoms you describe, and it is certainly possible for one individual to have multiple problems at the same time. Nonetheless, LOTS of our POTS patients do have headaches, abdominal discomfort, altered intestinal flow (with nausea, often), and other pains. Without seeing you, I wouldn’t be able to say whether all your symptoms are related to the POTS or not, but it is conceivable that they are. One way or the other, treatment should be able to help you (and all your symptoms) get better. Dr. Fischer
My name is Ann Gunter I’m 29 years old got diagnosed with Pots in 08. Recently since July of 2011 my Postural Orthostatic Tachycardia Syndrome has gotten worse, I live in Fl, last year I had only passed out twice but this year from March-NOW I have passed out more than 11 times. My cardiologist doesn’t want to do a tilt-table test or any other test like an EP test or anything else. I have been on Proamatine since August of last year but now my bp is running low most of time sometimes its normal but other times it can be as low as 85/55 hr 115. I’m wondering if my doctor should try another blood pressure medicine , I have been tried with Florinef before it caused me to have sezuires. I really am very frustrated with passing out again, I need to find a doctor who will listen to me and say I’m pretending to pass out. They think its anxiety my new psych doctor agrees with me that it has never been anxiety but medical related. My question to you can you help me . Is it time for me to get ICD in me or try new medication. Recently I got me a cooling vest it help me in the summer months but even with it on I still passed out.
Thanks Ann
Your question has been referred for an answer.
Thanks for writing to us. Your situation sounds very difficult, and we do hope you are able to work with a physician in whom you have confidence. Of course, we are not able to determine the cause of your passing out or to determine what medication would be best from a distance. But, we hope you do get good care. If you would like to be evaluated at Mayo Clinic, please call 507-284-3994. Dr. Fischer
I have a 15 year old daughter who was recently diagnosed with POTS by a neurologist – she has the excessive heart rate change upon changing positions. She is following the fluid and salt intake prescription, but is not getting much relief. Our neurologist recently referred us to a cardiologist who then told us that our daughter does not “clinically” have POTS because she is not lightheaded or pass out all the time. She has passed out a few times over the months/years and she does lose her vision when she stands and walks about 20 feet. She is VERY fatigued and suffers daily with stomach pain and nausea – which the cardiologist says is NOT a symptom of POTS…but every where I read it is. So to boil it down, my questions is does an individual with POTS have to have get lightheaded or faint all the time.
Thanks for sharing your daughter’s story. Different doctors do use different criteria to diagnose various conditions, and I wouldn’t want to disagree with a physician who has actually seen your daughter. From your description, though, your daughter sounds fairly typical of POTS patients. Most feel dizzy, and some pass out. Nausea and abdominal pain are common. Your daughter sounds typical. As more professional education continues, more physicians are becoming aware of POTS. I hope your daughter continues to get good care and improved control of her symptoms. Dr. Fischer
Thank you for your response Dr. Fischer. We were referred to yet another cardiologist for POTS evaluation. Again, her heart when they did the test went from 80 to 123, but again they say because she is NOT lightheaded when she stands they are not sure it is POTS. The dr’s don’t think the fatigue and stomach issues are a necessarily a symptoms of POTS..although everywhere I read it is. Unfortunately, the dr’s we are seeing do not have much POTS experience and therefore, cannot give her a clear diagnosis of POTS. We live in California, specifically they Bay Area, I am in desperate need of a POTS specialist in this are so I can get a clear YES or NO…do you know of a POTS specialist in this area? Stanford Hospital perhaps? I would greatly appreciate any recommendation!
My grandaughter’s husband is 28 yrs old & has a likely DX of POTS with all the typical symptoms. He has been treated by physicians at Vanderbilt but continues to worsen. It has been 6 mos and no improvement. The doctors don’t seem to know what to do next and don’t seem to be that concerned even though his life has been seriously altered. He’s unable to work or even leave the house except for doctor appts.thru the use of a wheelchair. He has pain in his extremities, numbness and tingling in face and head and increases in b/p when he stands. Constantly fatiqued to the point he gives out before completing his shower. He is very depressed and that is not being addressed. He feels his life is over. Are there any other alternatives for us at this point? Would you advise an evaluation at your clinic?
Your question has been forwarded for a reply.
I am sorry to hear about this young man’s difficulties. It does indeed sound like there might be more than just the POTS bothering him, and I hope he does get good help. The team dealing with POTS at Vanderbilt is one of the best in the world, and I’d suggest that your grandson-in-law discuss his concerns with them. I think they are extremely capable and can get him the help he needs – without requiring a visit to Minnesota. From your description, I think there is indeed excellent hope for improved symptom control and even some significant recovery. Dr. Fischer
I have EDS. I was treated for pneumonia about 2 weeks ago. I’ve been ill for over 5 weeks now. The congestion, cough, etc (cold/flu symptoms) have completely resolved. However, I struggle immensely with shortness of breath and a heaviness and pain in my chest which is on the left side and somewhat center of my chest. I get very dizzy and feel very unsteady. I am extremely fatigued, much more than what is usual for me. Chest X-ray, ekg & echocardiogram have all come back clear with the exception of some arrythmia. This is having an enormous impact on my life. I struggle with many limitations due to the EDS and the many complications that have come with it. I feel worse than I ever have and feel like I’m unable to function in any way. Your advice would be greatly appreciated! Thank you!
Here is a link to information on EDS: http://www.mayoclinic.org/ehlers-danlos-syndrome/. Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to seek help from Mayo Clinic, please call one of our appointment offices.
Go to this link for information on contacting Mayo Clinic: http://www.mayoclinic.org/patientinfo/appointments.html
My daughter suffers with nausea, stomach discomfort, headache, fatigue, joint/muscle pain, some cognitve issues, dizziness at times, heart palpitations, chest pain & pain in her left arm and fluttering in her throat, swollen glands, feels hot most of the time sometimes cold, has sweats when upset in any way. She has had Chronic Lyme Disease which she has been treated for over 2 yrs now. Is it possible she has POTS? She hasn’t had a tilt table test but was her heart rate was tested from lying down to sitting up which they said was normal. Any help would very much appreciated.
Thanks for sharing your daughter’s story with us. It certainly sounds like POTS might be part of what is going on with her. You could compare her pulse between lying and standing (not just sitting) and might find a more significant change – if so, you’d certainly want to further pursue the POTS possibility. I hope she gets the help she needs to fully recover. Dr. Fischer
My daughter is 23, and received a diagnosis of orthostatic hypotension from a cardiologist 6 months ago, based upon light-headedness and dizziness upon standing, and an episode of fainting.
Upon reading yesterday’s New York Times article on POTS, we were astonished to see that many other symptoms that she has had for years are also associated with POTS: fatigue and lethargy, foggy brain, weakness in the legs, nausea, belching and bloating, feelings of extreme cold, and excessive sweating.
We’re thrilled and grateful to learn about the work you are doing. My question is this: what type of medical care should we seek now? Is it important to get a diagnosis, and if so, where? We live in the Washington, DC area. I also wonder if you have an opinion about hypnosis, which has been highly effective in treating irritable bowel syndrome.
Thanks so much-
Great questions! I am glad that the New York Times article has been so helpful – to you and to others from whom I’ve heard.
A diagnosis can be useful to help focus efforts on recovery and to reassure the patient that the problems are not all mental. And, of course, knowing the diagnosis can lead to specific medical treatments that might help. But, checking the pulse lying and after a few minutes standing still might be enough testing, even without formal tilt table testing.
Hypnosis is effective for many conditions, but I am not aware of studies about its effectiveness for POTS.
Thanks for your good questions!
Phil Fischer
I was wondering your thoughts/experience regarding placing a girl 16 year old on oral birth control to regulate the symptoms of POTS. Our daughter symptoms are much more sever right before and during her menstrual cycle. I have read some about girls using oral birth control to help relieve some of the POTS symptoms during this time. I also have a second question, have you found your POTS patience more susceptable to getting migraines..our daughter now seems to suffer from them.
We have received your question and are checking on the answer.
When our daughter was diagnosed with Lyme Disease, she was also diagnosed with VonWillebrand’s Disease (a blot clotting disorder).Her periods were not only extremely painful, but she bled through everything. Her symptoms (Lyme)were also increased when she had her period. We spoke to a GYN, her Lyme physician & a hemotologist who all thought it was mandatory for her to be on birth control, which we did @ age 12. It helped enormously!! I hope this helps!
Have you ever had your daughter checked for Lyme Disease??
Great questions – thanks for raising them.
Yes, lots of young women with POTS have more trouble with their periods, and their periods seem to make their POTS worse. Using cycling hormones (either in the monthly “birth control” style OR with three-monthly cycles) helps many young women do better.
Yes, POTS and migraines go together. Sorry! Fortunately, treating one also helps the other.
I hope these comments help.
Phil Fischer
My 14 yr old daughter was diagnosted with CFS. Her doctor said POTS is one symptom of it.
She put her on metoprolol for blood pressure abnormalities and daily salt tab plus coconut water to keep her blood volume up.
My daughter also had headaches and fatigue.
To address that she prescribed lose dose Naltroxone.
She also does not eat glutin because it upsets her stomach.
To boost her immune system she takes a medicine approved in Canada called Imunivir.
I have to say she is finally showing some improvement. It has been a year and a half since she got ill with flu like sysmptoms and 6 months since we got a doctor that could help her.
I am writing this to possibly help someone else with more than just POTS.
Before we started on these medicine the doctors told us to try gradually increased exercise. We did and she relapsed and got much worse. Since the meds and increased salt and fluid she has been able to go to school part time and exercise without a relapse.
My 15 y.o. daughter was diagnosed with POTS almost 2 years ago. For the past 16 mos her symptoms of dizziness, syncope and fast heart rate have been managed with fludrocortisone and metoprolol. Her headaches have been somewhat reduced with 500mg of Tyenol daily. Still has lots of fatigue and has consistently complained of nausea. She can only eat small amounts and then her abdomen will hurt.We attributed this to POTS but then her symptoms got pretty severe in June so we had an abdominal ultrasound and CT scan done. It showed a narrow angle (16 degrees) between her superior mesenteric artery and her aorta and a distended small intestine. Called it Superior mesenteric artery syndrome (SMA). Plus she has very hypermobile joints and pain associated with that. Every doctor mentions possible Ehlers Danlos Syndrome(EDS) so we are wanting to rule that out and/or specify the type.
My questions are: does SMA syndrome accompany POTS? Or did she possibly develop SMA due to her inappetance with POTS?(although she has maintained her weight, but not gained any in 2 yrs) Does POTS accompany EDS syndrome? If she has to have corrective surgery for the SMA are there certain precautions to take with POTS patients in terms of general anesthesia? We are thinking of bringing her to Mayo to help us put all these pieces of the puzzle together. Please advise. Thank you!
We have forwarded your questions for reply.
Great questions!
Superior mesenteric artery syndrome usually only develops in people who rapidly lose lots of weight. Treatment is to re-gain weight, and then the SMA syndrome resolves. I have had a couple (rare) patients with SMA syndrome and POTS – they got better with regained weight; interestingly, their POTS nearly resolved “just” by overcoming the weight issue. Sometimes, though, the POTS symptoms persist until the body rehabilitates to get back into the eating habit. Surgery would not be a typical treatment for SMA syndrome unless it is simply to place an intestinal feeding tube temporarily to get the weight back up.
Nausea is common with POTS and should not require special treatment. But, when nausea persists despite improvement of other POTS symptoms, medications can sometimes be adjusted to give better relief.
Lots of POTS patients are stretchy, and some of them have Ehlers-Danlos. But, the treatment is the same whether or not they have Ehlers-Danlos. So, doing ED testing does not typically provide any change in treatment. Thus, it’s often not worth bothering with the testing.
So, those are general comments. For your daughter in particular, not everything fits together very well – especially the “SMA syndrome” without initial weight loss. Any specific comments about her diagnosis and treatment would require her to be seen. Our pediatric POTS appointment number is 507-538-4206, and we are increasing our staff recruitment to help with the many many patients who are waiting for appointments here.
I hope these comments help. Phil Fischer
Thank you, Dr. Fischer-
We are going to try to increase her caloric intake and hope she gains some weight. The next step would be the feeding tube. Her GI doctor does want to do an endoscopy now, however, to see the amount of stricture there is on the duodenum. So my question is this: are there special precautions to take with the general anesthesia since she has POTS? Thank you!
I’ve been searching for answers and came upon this site. Dr. Fischer, I would really appreciate if you could respond. My son just turned 22. He was just diagnosed with vasovagal syncope. He did a tilt table test and passed out after 7 minutes, with his heart stopping for 10 seconds. He was sent for this test by a cardiologist who happened to ask if he passes out. His answer was 7 times.The only time we were aware of his passing out was once or twice 2-3 years ago when he was away at school. He called to say that when he was in the bathroom, he felt dizzy and passed out. Otherwise we only know about him feeling woozy when he had routine blood work taken. The cardiologist put him on 5 mg pindolol twice a day. He has still not recovered from the test that was taken 2 and 1/2 weeks ago. Whereas before his main complaint was fatigue, he now feels dizzy as well when standing or walking. So much so, that he cannot commute to work on a bus or train.
Just some background info – don’t know if there is any connection. He was always a very lively toddler, but a very picky eater. At about 7-8 years old, he started having tics such as eye rolling, grimaces and throat clearing.We thought it was tourettes. As suddenly as they appeared for a few years, they just disappeared. He was always a very bright student,and the only complaint from the teachers was that he daydreamed. But he was always a straight A student so we thought nothing of it. In high school his main complaint was headaches and fatigue. He had mono (don’t remember if that came before or after the headaches). The doctors thought it was depression. He actually took 10 and 20 mg of Prozac with no change either way to symptoms. Since he was going away to college (Cooper Union) we decided to stop the medicine since it wasn’t doing anything. We thought moving out and and a new environment would improve things. He actually made it through Cooper Union, but was falling asleep in class and having a hard time focusing. We thought it was the intensity of the curriculum as well as the occassional college partying. A year and 1/2 ago he did a sleep study which ruled out narcolepsy but showed hypersomnia. Around that time he also started widening his culinary horizons and ate very healthy and tried to work out.
He graduated this past May, and in the middle of June started a job. He moved back home, intent on fixing up the downstairs for himself, and also started an intense excersize regimen. He bought barbells, Boost and Gatorade. This lasted about 3 weeks, and then he couldn’t anymore. Everything just froze. The apartment still looks the same as when he moved in, things still all over. No more excercize. He can barely go to work and back and is having trouble meeting his work deadlines. The doctor sent him to a rheumatologist because he thought the ANA was high. The rheumatologist ruled out Lupus, MS etc. and thought fibromyalgia. Put him on Flexerall and he was like a zombie. Then he tried Provigil for CFS and that made him panicky and dizzy but still tired. We went back to the sleep dr. who put him on a Cpap machine for a month and a 1/2 with a diagnosis of upper airway resistance syndrome (another of his symptoms is always feeling like he has a cold)but he did not feel any less tired. We were going to try a psychiatrist next, but until we were able to get an appointment the dr. suggested a cardiologist because he got dizzy when he excersized. And that’s where we are now. His EBV level is going down according to his dr., but he still wants to pursue the CFS angle. He also put him on 20 mg Vyvanse in addition to the Pindolol the cardiologist gave him.
Sorry this is so long but I’m at my wits end. He is a bright boy with everything going for him (thank g-d) but he is barely functioning. I don’t want him to have to quit (or be fired) his job.
He can barely get through the day , let alone think ahead to the future. Please, if you have any ideas or insights I’d really appreciate it. Thank you so much for your time.
Thanks for your interesting comments and sad story. But, congratulations to your son on his graduation from college and successful job search in spite of his lingering fatigue.
It sounds like your son is actually getting reasonable care, and hopefully the cardiologist will be able to pull all the pieces of that care together. It could be that even an additional medication might help – maybe something like midodrine for the dizziness side of things – but it’s impossible to know that for sure from a distance. The “fibromyalgia” and sleep difficulties and POTS symptoms often occur concurrently; treating one part helps the whole, and comprehensive treatment helps everything.
I hope things go well as you get all your son’s care organized and unified. Phil Fischer
Thank you for your response. The dr. is suggesting he see a neurologist since he has still not recovered from the tilt table test. Although feeling tired, he was able to stand and walk, and take a train or bus. Since the test, he cannot stand on a crowded train.
Can midrodine be taken together with the pindolol and vyvanse? This couldn’t have happened at a worse time. He has deadlines and presentations due in the next 2 weeks and he can barely function.
I appreciate your comments.
I posted something yesterday, and today I don’t see it anymore. Any reason?
I’m sorry I don’t see your post from yesterday. Is it possible for your to send it again?
Thank you so much for sharing this information!
My son was diagnosed with celiac disease at age 12 in 2006, then with mono and Lyme disease in 2007. After contracting mono, he never really seemed to recover. During high school, he missed well over 100 days of school because of stomach discomfort, “brain fog” and overwhelming fatigue. We took him to be seen by pediatricians, gaastroenterologists, rheumatologists, an infectious disease specialist, and a psychologist, and everyone we saw attributed his symptoms to celiac disease, even though he has been 100% compliant with his diet and his celiac antibodies have declined to 0, or to depression although, despite challenges, he has remained emotionally resilient. Now, reading about POTS, I am overwhelmed by how strongly he fits the profile. Given that none of the specialists he has seen has ever spoken with us about POTS, I’m wondering what to do next. What kind of doctor usually treats POTS? My son is now 18 and I am thrilled to hear that, if he does, indeed, have POTS, he should start feeling better in the coming years!
Thank you so much for giving us this information and the hope that comes with it!
We have received your comment and referred it for reply.
Great questions!
From what you say, it does sound like your son might have POTS. You could get a better clue about the diagnosis by checking his pulse lying down still and then again after standing up perfectly still for three minutes; if the pulse rises lots (like more than 30-40 beats per minute), it might be that he does have POTS.
Medical knowledge about POTS is expanding, and more and more doctors are learning about the condition – fortunately.
Sometimes, general pediatricians (like me) and internists have enough experience to care for POTS patients. Otherwise, there are some cardiologists and some neurologists with good experience.
Celiac disease can indeed mimic POTS in some ways. But, as you say, being fully compliant with the gluten-free diet and having celiac antibodies back to normal sure makes it seem like the gluten sensitivity is NOT the cause of the current/ongoing symptoms.
Hang in there! Phil Fischer
Dr. Fischer,
Thank you so much for your help!
My daughter was diagnosed with POTS at the Mayo in 2007, she started a rigourous treatment plan of metroprol, high salt diet, lots of fluids – gatorade, 30 minutes upright cardio and exercises to keep blood flow moving. This seemed to work well for about 3 years. She was down to maybe one passing out episode a year and now they have gradually increased and feels terrible every day. She is 24 and wakes up every morning feeling light headed and dizzy. When she exercises now within 15 minutes if she is going hard will start to feel like she is going to pass out. She said the last six to 9 months have felt different than the POTS passing out – she didn’t have the stomach ache first. Could something else be going on here??
We have referred your question for an answer.
I have another concern with our 15 yr old daughter. When she was first diagnosed with POTS she was passing out two or three times per month. Once she started the meds (metoprolol and fludrocortisone) she went for almost 9 mos. without passing out. Lately, (the past four weeks) she has passed out 3 times. These last few times, her muscles have all gone stiff nad flexed….especially her arms, wrists and fingers… and they stay flexed for 45 min to and hour and she can’t move them. She wakes up and is fully conscious but the muscles in her arms and fingers stay almost rigid and she says it hurts to try to bend them. We are having her evaluated by a neuruologist soon. Could this be seizure like activity, or a side effect of meds or an electrolyte imbalance? Just wondered if you had ever encountered this with any of your patients. Thank you for your input.
I have a question about POTS and head injuries. I have recently received a diagnosis of Inappropriate Sinus Tachycardia. My doctor gave me that diagnosis instead of POTS because I have had my symptoms for 18 years (I am 26 now). She said most people grow out of POTS, so it would be strange for my symptoms to last so long (symptoms include exercise intolerance, inability to get out of bed in the morning, headaches, pain, fatigue, muscle pain, chemical sensitivity, and of course, raised heart raise upon standing). I read a research journal that hypothesized that POTS could be a long-term symptom from a head injury. I fractured my skull (in the forehead area) when was 8 years old in a bike accident, and have had POTS symptoms ever since. I guess my question is, if POTS was caused from a head injury, not an infection, would that cause me to not grow out of it?
Thank you for your note Kristen. I have forwarded your questions to Dr. Fischer and will get back to you with his reply.
I’m sorry to hear about your long-term challenges with so many miserable symptoms.
There is overlap between POTS and Inappropriate Sinus Tachycardia, and treatment is often very similar.
We don’t know much about a link between head injury and POTS. Usually, POTS develops after someone has sudden inactivity (with an illness, or sometimes following an injury); with that in mind, the head injury could have caused a person to lie around for days and then develop POTS. But, your troubles started at 8 years of age which is also younger than POTS usually starts. Sometimes, we see autonomic dysfunction that seems like POTS after neurosurgical procedures; we postulate that the underlying tumor or the operation impacted the part of the brain that controls the autonomic nervous system.
I have seen a few people that seemed to get POTS after a concussion, but this is not a common situation. I tend to be optimistic and would still think that adolescent POTS, whatever the trigger, will improve over time – even if slowly.
I hope these comments help, and I hope you do well.
Dr. Phil Fischer
Thanks for your reply!
Thank you for your response Dr. Fischer. We were referred to yet another cardiologist for POTS evaluation. Again, her heart when they did the test went from 80 to 123, but again they say because she is NOT lightheaded when she stands they are not sure it is POTS and also because she does not experience palpitations or chest pains they don’t think it is POTS. The dr’s don’t think the fatigue and stomach issues are a necessarily a symptoms of POTS..although everywhere I read it is. Unfortunately, the dr’s we are seeing do not have much POTS experience and therefore, cannot give her a clear diagnosis of POTS. We live in California, specifically they Bay Area, I am in desperate need of a POTS specialist in this are so I can get a clear YES or NO…do you know of a POTS specialist in this area? Stanford Hospital perhaps? I would greatly appreciate any recommendation!
I have both POTS and Meniere’s disease. Which, having both conditions is posing some kind of a problem.
My cardiologist has told me I need to increase my salt in-take to help with the daily symptoms of Pots (I also am taking Midodrine 3 times a day).
My ENT physician has told me I need to reduce all salt (or as much as humanly possible) to avoid the completely debilitating Meniere’s attacks that can come on suddenly. Salt is a major trigger of that.
While both symptoms are horrid, I’m finding myself confused at which ‘salt’ intake I should abide by. I do not enjoy the symptoms of POTS, and do seem to feel better by increasing the salt, but I also do not want to risk more Meniere’s attacks.
I guess the ‘happy’ medium isn’t helping EITHER situation.
Are there any other things similar to salt that can help along with the Midodrine?
We’re checking into an answer to your question.
Sorry to hear about your treatment challenges. I have only encountered this once before, and I don’t have a great answer. Hopefully, your doctors will be able to work together to balance your treatments – since they do indeed seem contradictory. It is likely that treating the POTS with more salt will end up being more useful than restricting the salt, but your doctors will need to customize a plan for you.
Hang in there! Phil Fischer
Thank you so much. My doctors have both said that I must find my ‘happy’ balance as both treatments contradict the other condition. I’m trying hard to do so. Thank you for this website…..been helpful
Regarding Melanie’s post from 11/26/11, I too have both Meniere’s Disease and POTS.
My POTS diagnosis was confirmed at the Mayo Clinic years ago and I’ve been getting by with increased salt, fluid and regular exercise. I was diagnosed with Meniere’s three months ago and it is perplexing that the treatment for Menier’s is contradictory to that of POTS.
To reduce fluid build up in my ears and more debilitating vertigo attacks,I’m on the diretic Spironolactone 25mg. I seem to be having more stabbing pain sensations near my heart.
Is there a correlation between Menieres and POTS?
Any research being done that would be helpful?
Hopefully Melanie is doing well and has found a good balance that she would be kind enough to share.
Thank you.
I did have another question. I’ve been doing some research on POTS and it’s symptoms. I have had a million dollar cardio work up and all was negative except for a large amount of PVC’S & PAC’S and heart rate that jumps dramatically upon standing. Despite that, I have what I call intense chest pain. Not every day…but during cycles. Some days are worse than others. The pain is intense yet tolerable. I have all the other more ‘common’ POTS symptoms. I’ve been to and from the ER and to my cardiologist. He has told me that it’s a common symptom of POTS (but he also used the Wikipedia about POTS in front of me) haha…, but I haven’t seen this as common on my research online. Is left chest pain normal for a POTS patient? Piece of mind is invaluable.
We took our son to the emergency room this weekend because he was complaining of dizziness upon standing, lightheadedness, heart palpitations, chest tightness, and general fatigue all weekend. He has complained of these symptoms before and has even passed out on several occassions. He started having these symptoms during his teen years and is now almost 20. We have had him to the emergency room before due to the same symptoms, but have always had the same responses…everything looks normal. He was born with the congenital heart defect, transposition of the great vessels. He had an arterial switch at 13 days old. Our concern is that the doctors are missing something. He played tennis in high school and at times would have to stop playing in the middle of a match because his chest would hurt, he would experience heart palpitations, and had trouble breathing. Again, we took him to the ER after one such episode and were told everything checked out okay. Well, this past weekend when we took him to the ER, I feel like perhaps we may have reached an answer. The doctor on call ran a battery of tests and again all was okay. He then ordered a test to check heart rate from resting, lying down state, to standing. Our son’s heart rate went from 55 to 100. This doctor suspects that perhaps he has POTS, but has ordered us to see his cardiologist for follow-up. I am anxious to see what the cardiologist finds out. It is the same cardiologist who has followed him since birth. My fear is that our son will be feeling better, (as he has good periods and bad periods), and he won’t have the same excellerated heart rate results when doing the tilt test. Is this possible, or if you have POTS will you always feel dizzy, and have the increased heart rate upon standing? Also, is it normal for POTS patients to have good periods and then experience periods of extreme fatigue, dizziness, and general illness? Our son will have stretches of time where he is acting and feeling normal, but then he does a complete reversal where he wants to do nothing but sleep, feels dizzy, has heart palpitations, stomach aches, etc. We’ve often wondered if he is depressed, (he has even been on prozac), or perhaps even lazy. We worry about his success in life, as he has trouble concentrating and remembering things, even though he studies. He has never been a good sleeper. Any insight would be appreciated.
Great questions! Your son has an interesting history, and I agree with what you all are doing. Clearly, he should see the cardiologist again to make sure there is not a structural or cardiac problem.
POTS symptoms do often wax and wane over time. But, it would be unusual for the postural change in heart rate to fully normalize just because the person is feeling better at the time. The good news is that if your son often feels normal, he will probably do fine with increased fluid and salt intake and regular reconditioning exercise; he might not need medications. If, however, the dizziness and fainting episodes persist despite the fluids, salt, and exercise, then a beta blocker or midodrine might be useful. His cardiologist should be able to sort through all this.
Phil Fischer
I live in Dandridge TN and have a 15 yr. old daughter. Two weeks before her 14th birthday she started passing out and things went down hill. She has been to every doctor you can think of including Childrens hospital in Knoxville, Centenial and Vanderbilt in Nashville. They say it’s not seizure and her heart,they all say . nothing really shows up but she stays tired, passes out from several times a day to once every one or two months now. It seems to be worse around the time for her period. She also has headaches, acid reflux, chest pain, anxiety. She has tried a lot medicine for anxiety since she was in kindergarten but always has a side effect. She is so sensitive to medicine now we can’t even find an antibiotic for a sinus infection. This really scary! Too much sugar also makes her pass out worse. Could you help? Nobody else can. She is also homeschooled.
Thanks for sharing your sad story with us; we feel for you and your daughter.
A good team approach to care could probably help, and you have tried good places. It is not possible to make specific medical recommendations without seeing your daughter, but she could try to call 507-538-4206 to try to get an appointment at Mayo Clinic if you wanted to travel this far.
I hope things work out for you all. Phil Fischer
I am a 16 year old girl that was diagnosed with POTS syndrome a year ago, but have probably have had it for 3 years. The doctors believe my POTS is a result of Hyper mobility syndrome. I have been following all the recommendations: I drink 3-4 Liters of Fluid a day; eat approximately 10 grams of salt; I am currently taking .2 mg of Flurinef and .10 mg of midodrine 1 or 2 x’s per day, and I exercise at least 30 minutes a day. I have been reading about saline infusions and the positive affects that POTS patients have gotten from getting them. I would like to present to my doctor any research or benefits about saline infusions and what type I should get. I have two questions, what is your recommendation/findings on saline infusions, and where could I find good information to present to my doctor about them. I appreciate your help.
In September of last year, my then 9 year old daughter began complaining of a headache. Within two weeks, she was so tired, weak and aching in her legs and hips that she could not stand on her own. She was passing out while sitting in the bathtub, stumbling when someone would try to get her to walk, and having increasing abdominal pain. She complains of “feeling hot inside”, perspires very little if any at all (even though she wears a sock hat year round), has random flushing, visual changes, chest pain, extremely tired most of the time and the list continues. We have been to Kosair’s Children’s Hospital, Boston Children’s, and Cincinnati Children’s. During one admission at Kosair’s they tested her for Mono, which came back positive, however I wasn’t told about the test or the results. I only found out about her having Mono because I have her medical records. She was diagnosed with dysautonomia during this time but no one mentioned POTS. She is on Florinef 0.1 mg BID. Two doctors said they thought it was conversion disorder. Another, believes it is just migraines and also told us that POTS is not getting diagnosed like it once was. The other doctors just don’t know what is wrong with her. Only her primary care physician and her neurosurgeon believe that there is definitely something going on, just not sure what. I have educated them on POTS through information I have found through this website and a few other reputable websites. I have been a nurse for almost 20 years and had never heard of POTS until about a month ago when another nurse I work with told me she has POTS. I live in Owensboro, Kentucky, about 120 miles west of Louisville. Are there any doctors that you would recommend that are closer to us. I will arrange to bring her to Minnesota if I need to. It is difficult at best to find a doctor educated enough in POTS to diagnose. Most that I have spoken with have never heard of it or had to deal with it.
We have referred your question for an answer.
Thanks for the interesting but sad story. Perhaps a few general comments will be useful even as you consider a trip to Minnesota (507-538-4206 to get started on setting up an appointment).
POTS and dysautonomia are overlapping diagnoses. Technically, POTS is one form of dysautonomia (or “autonomic dysfunction”), but some people use the words interchangeably.
Migraines, other headaches, and POTS often occur in the same person at the same time. And, 9 years of age is a bit earlier than most people develop POTS.
Mono is a frequent trigger of POTS in the United States, but there is no specific treatment difference whether the trigger to POTS developing was mono or something else. Mono blood tests can help see whether there has been a past or recent infection, but the blood tests do not accurately identify the time of the infection or how the infection might or might not relate to other symptoms.
Interestingly, POTS patients (with their “confused” autonomic nerves and altered neurotransmitter function) can develop conversion disorder sorts of fainting/”seizures”/spells/movements/blindness on top of their POTS. Of course, we need to treat the whole person with everything going on.
And, you are correct – POTS awareness is still a bit limited, but more and more lay and professional people are becoming aware of the condition. It’s only about 13 years since the condition was first described in an adolescent (even though we can now look back and see that it was happening for many generations).
I hope your daughter gets the good care she needs. Phil Fischer
Her symptoms “began” in September, she turned 10 in November. My other daughter began her menstrual cycle one month after turning 10, as did I. I thought that could possible explain the reason for such a young age if thiws is POTS, and if she is at the doorsteps of puberty.
Thank you for your response and your promptness.
Hi Angela,
I have a daughter with POTS also. Don’t know if you have found this website, but it is very helpful. I live in California and this is how I found our physician. It looks like there is a physician in Kentucky…I don’t claim to know anything about him, but the doctor I went to referenced from this site was AMAZING. Good luck…it is rough as a parent to go through this with your child.
http://www.dinet.org/physicians.htm
My daughter, Hannah, was diagnosed with mono in May of 2010. Since that time, she has suffered from increasing fatigue, stomach ailments, headaches, dizziness, muscle weakness, temperature disregulation, anxiety, and body aches. She has had many, many tests over the past 18 months but no definite diagnosis has ever been made. She has been chronically ill with bacterial and viral infections requiring constant medical care over these past 18 months. Four weeks ago, she started having “partial seizures” which she had never had before. She was hospitalized and was told after seeing an Endocrinologist, Infectious Disease Specialist, Neurologist, and Internal Medicine specialist,that they would send an urgent request to Mayo in Rochester for consultation. After doing so, we were denied the consultation by Mayo in Rochester with a letter stating that “they did not feel that they had much more to offer”. We did not find out until just receiving her medical records that the hospitalist (who told us that it was beyond him and we needed to go to Mayo for a diagnosis) wrote up the referral as “self-admitted poor eating habits and anxiety disorder”. The poor eating habits are secondary to her nausea but we had explained that she eats only foods high in nutrients but can only eat small amounts at a time to keep from vomiting. We are desperate at this point and very discouraged. Her muscle spasms and twitches (eye-rolling, lid fluttering, and body spasms have increased in frequency to near daily) and the doctors just want to keep doing more tests on her. She has been completely debilitated since December and is becoming more and more depressed. She tells me that her quality of life is not worth living. Eighteen months ago, was was an elite athlete planning to play soccer in college. She has had to come home from college and I am terrified that she will be left with permanent damage if her condition is not diagnosed and properly treated. We live in Evansville, Indiana and have been told that there is a 7 month waiting list at Vanderbilt. Is there any way that we can be reconsidered at your institution? I asked her primary care physician to call the doctor on-call, but he said he wanted to do more tests so that he could “have his shot” at diagnosing her. The “urgent referral” has now been 3 weeks ago. Can you please advise me of the best course of action at this time? We are desperate to find an answer to her wide range of symptoms which have left her so completely debilitated and have robbed her of her life. I do not believe that this 19-year-old girl’s body just self-destructed without a cause. Please help.
My daughter, who just turned 16, has suffered for nearly a year with what we’ve only recently realized is almost certainly POTS (heart rate in the 70′s while prone, 80′s while sitting, 120-130+ when standing [also her heart rate jumps all over the place rather than staying fairly even]; light-headedness and near-fainting; chest pain; debilitating exercise intolerance which is interfering with school and her social life).
The heart rate figures come from our home pulse oximeter, but were also confirmed during a recent stress EKG at Children’s Hospital Oakland (CA). Before she worked out on the treadmill she stood upright for a couple minutes, during which time her heart rate was mostly in the 120′s. The treadmill test was very exhausting for her, but the results were normal other than (apparently) some minor arrhythmia. However, incredibly, despite the fact that I’d told the cardiologist beforehand that we thought my daughter had POTS, her pre-treadmill standing heart rate was not recorded dynamically; appartenlty only a “snapshot” heart rate was taken when she was standing still, which read 104 (her heart rate was jumping erratically from the 90′s to the 120′s, although it was mostly in the 120′s). The cardiologist was not present for the test, and the electrophysiologist and assistant were only looking at the EKG lines and ignoring the heart rate.
The cardiologist did prescribe low-dose a low dose of Atenolol at our insistence, but we’re afraid to use it because our daughter also has seasonal allergies for which she’s about to take immune therapy, and apparently beta blockers can prevent therapy for anaphylaxis, should that occur during the immune therapy.
Also, by the way, our daughter was also diagnosed with possible celiac, based on endoscopy and an elevated blood Ttg reading.
My question is this: We want a diagnosis of POTS (or not) from a physician that knows something about the condition, and some kind of medical plan to follow. I know that we could get that at Mayo Clinic in Minnesota, but we live in California. The Mayo Clinic in Arizona would be much easier to get to, but I’m not sure they do pediatrics or have anyone knowledgeable about POTS. We’ll go to Minnesota if we must, but it’d be much easier (and less expensive) for us to go to Arizona. What do you think?
I feel your pain Stephen…I had many struggles with getting our 16 year old daughter diagnosed too. We are in California also and have Kaiser…the neurologist would say she had POTS. The cardiologosit would say she didn’t. I was frustrated and just wanted a yes or no answer so I could get a proper treatments started. I too considered going to Mayo, but found a doctor in Oregon, Emilia Arden who trained under Dr. Blair Grubb who is well know for his work in POTS. She was amazing! VERY knowledgeable in POTS and easy to get an apt. It is a quick flight up to Portland and was well worth the trip. There is also a Dr. Karen Friday at Stanford – I made an apt back in Nov 2011, but was not able to get in until July 2012 (my apt is now bumped upt to May 2012). Since I have yet to see her yet, I can’t really comment on her, but I know of thers who saw her and were very impressed. I found both doctors on http://www.dinet.org….good luck!
I forgot to mention that we saw her in Jan of 2012 and started the meds and the other treatment plan….after being home for six months, my daughter is feeling so much better she is getting ready to transition back to school! AMAZING!
Thanks for your kind words, Anita, and I’m happy for your daughter, too–I know how hard POTS can be on teenagers.
Dr. Fischer emailed me with the name of a local neurologist, who is helping us, and who also referred us to a local cardiologist who treats POTS patients. My daughter just had a tilt table test done, and based on that did diagnose her with POTS (which was pretty much a forgone conclusion in OUR minds, considering her symptoms).
During the tilt table test, her pulse was in the 90′s resting (she was nervous; it’s usually in the 70′s supine). During the 70 degree tilt her pulse shot up immediately to 156 and then settled down to the 120′s and 130′s.
So my daughter now has a prescription for midodrine (which she hasn’t yet taken), and has been hydrating with lots of salty water and a gluten-free hydration drink I found on line (CeraLyte ORS 75, each packet of which has 75 Eq/Liter of sodium, which I believe is about 1.7 grams of sodium).
It’s too early to tell how she’ll do with midodrine and water/sodium, but it’s just a relief to finally find physicians with some knowlege of POTS!
Thank you, Dr. Fischer, for your help in this matter! You’ve been a huge help to us in providing this forum, and obviously to a lot of others, too. Thanks!
I was recently diagnosed with POTS. I generally always have postural tachycardia, but for the most part Im pretty asymptomstic. I have noticed recently that my tachycardia improves prior to and during menses. In fact I don’t become tachycardic. Does anyone have any insight into why this would happen? My POTS also began after I stopped breast feeding my 1 year old.
Thank you
Fascinating! Thanks for the note – even though I, as a pediatrician, can’t give you very definitive answers. POTS and hormones are often linked, but we don’t understand exactly how and can’t predict in what ways for an individual patient. Most adolescent females with POTS seem to have worse POTS symptoms during menses – so you are fortunate in the other way. One would wonder if you retain fluid better during menses – if that is the correct explanation, then perhaps you’d do better with further increases in your regular fluid and salt intake. POTS seems to get better during pregnancies but sometimes worsens again later (if it comes back at all). As far as I know, your body is giving clues to medical science, but medical science hasn’t yet been able to piece all the clues together. Hang in there! -Phil Fischer
Thanks so much for the response. I had no previous knowledge of POTS, and now that I have it, I still feel like I don’t know anything about it. It seems so variable between patients and complicated. I appreciate the insight, I have had a feeling that mine is hormone related. It’s so coincidental, that I stopped breast feeding and had my first menses, then this all began. My fingers are crossed that my body will somehow rebalance itself, and I will be done with POTS. Who knows.. Thanks again for taking the time to respond to my question
Hi dr fisher
Do u know of a dr in Orlando fl that treats pots. Also do patients ever get better enough to work and have a life. Just got diagnosed 4 months ago. I got it when I was pregnant. I live a sad life. Can’t work or go places with my son. Please help.
Thanks
Roms
We’re checking with Dr. Fischer.
I am very sorry to hear about your sad life. Indeed, most people with POTS do improve and live productive fun lives. Unfortunately, I do not know of a physician in Orlando who specializes in POTS care. -Phil Fischer
I was just diagnosed with POTS. Resting heart rate 70′s, tilt-table test, HR 160′s. I was instructed to drink water, add salt and could try a beta blocker. Atenolol or Inderal. Does one beta blocker seem to work better with less side effects? Also, I feel as though I have to take constant deep breaths to fill my lungs…especially with exercise or walking up stairs.Is this part of POTS? If I take a beta blocker will that increase shortness of breath feeling?
We’ve referred your questions for reply.
Thanks for the good questions. Of course, your doctors will need to work with you for specifically customized care. In general, though, any beta blocker can help with POTS. Some people feel more tired with any specific beta blocker – if that happens, they can try a different one. Some patients with POTS do get short of breath, and beta blockers can help with that. I hope things go well for you. -Phil Fischer
I could give a long messy story, with lots of details – but let me summarize.
My fiancee (age 25) suddenly became severely ill almost two years ago – and the many doctors we’ve consulted have been mystified. General pain, fatigue, exercise intolerance (fatigue), acute and intermittent abdominal pain & headaches, palpitations, highly variable heart rate (from normal to tachycardia), numbness (and sometimes a burning sensation) in extremities, persistent itching, “brain fog” (especially impaired concentration), intermittent aphasia, polyuria (5+ L in 24 hours), diarrhea, and more. Oh – and satisfying her intense salt cravings with very strong salt water sometimes significantly improves her symptoms, though it’s not consistent. We’ve been looking everywhere for answers… and suddenly I found out about the dysautonomias, and POTS – which cover (at least anecdotally) at least a large cross-section of her symptoms.
Today we checked her pulse lying and standing… just manually, at the wrist. Lying down, it was around 73 per minute. Standing, it jumped to around 108 and stayed there for at least 10 minutes. Her blood pressure did odd things too – it jumped up, and after 10 minutes standing, I seemed to get a reading of 130/100. During all of this, her symptoms definitely worsened steadily while she was standing.
The problem is that we applied to Mayo Clinic months ago, when her internist first told us he was running out of ideas and suggested we consult the Mayo Clinic… we were referred to neurology, and denied the appointment on the basis that they didn’t feel they could add to the evaluation. We didn’t know about the postural tachycardia at the time, so that wasn’t mentioned.
We’re just in Chicago – 8 hours away. Is there any way to redo the appointment request and ask for something more specific, such as evaluation of potential autonomic disorders on the evidence of postural tachycardia? Should I just call the appointment center and try again, or will I be told that we were already denied? (Also/alternatively, does anyone know of a good autonomic clinic in Chicago?)
We’re checking into information for you.
I am sorry to hear about your fiancee’s troubles, but it sounds like you are indeed on the road to a helpful diagnosis and treatment plan. You could have her home physician refer her to Mayo Clinic by calling 507-284-2511 and asking for the POTS Clinic for POTS-related evaluation and care. There is a waiting list for appointments now, but it might not be as long as the other group that had to deny the appointment request. I hope things work out well for the two of you. -Phil Fischer
i have pots..i have been treated with almost every beta blocker out there and it doesnt work for me it makes me worst more at the hospitals then home when iam on them..iam now on midrine and it keeps my heart rate now down below the 200′s..i been having alot of other things going on in and out of the hospital..tachycardia ,bradycardia blocked pac’s and pvc .atrail runs.pjc’s and aberrant afib vs ventricular run..the most recent 2:1 av block and dropped beats..etc,,they have mention a pacemaker for me ..but iam not sure if this is the right choice..i have also notice that u have to be rich to be sick..i have tryed to get into the mayo clinics twice so far but because i live in a different state and am om disablity and now have medicad they will not work with me..i have a appointment for vanderbilt but just hope i will be well enough to get there..also can i fly ? is it safe it would be almost a three hour flight but to drive about 13hours..
For everyone that has posted, I am a POTS patient of Dr. Fischer’s. Would just like to say he is a great doctor!! I drive over 8 hours to see him once a year and it is so worth it. I struggled in high school with symptoms, but he taught me what I had to change and what medications to be on, and it changed my life.
On another note, I did see someone else post about SMA syndrome. I also was diagnosed with that a couple years before POTS. Could just be a coincidence though because I did have surgery to fix the SMA problems.
Once again, Dr. Fischer is amazing!!! He knows what he is talking about, and I was very happy to see him sharing his knowledge with so many people!
Thanks Dr. Fischer!!
-Alanna Smith
Wilton, ND
i have pots and i was also just told i have thyriod cancer and this could be my main cause for my pots at least this is what i was told by ny appt i had at vanderbilt in tenn..would this give me all my troubles..because not all of what i have falls under just pots..i have tachicardio as high into 200 just lying down and then also have bradicardio as low as in the 30s..any info u can share would be great..also i have to have surgerty to have my thyriod taken out and then radition..will any of this effect me badley? cause i had my gallbladder taken out and thats how and when i got my pots?
I’m sorry to hear about your multiple medical challenges. Sometimes, people seem to have POTS when the problem is actually “just” a thyroid problem; treating the thyroid problem resolves the POTS-like symptoms. Other times, people do have both separate problems at the same time. Either way, there are good doctors at Vanderbilt, and it sounds like your main priority for now will be to deal with the thyroid problem. After that, you can see how much POTS remains and what to do about it. I hope things go well for you. -Phil Fischer
I am 23 years old and recently been diagnosed with POTS. Luckily my symptoms are mild at this point. I have had 5 syncopal episodes total and I mostly feel very tired and find it hard to complete simple tasks like cleaning the house. One question I have for you is; I have experienced facial swelling. is that a symptoms of POTS? Also, I am looking for a specialist in Knoxville, TN. Any suggestions?
We are checking on an answer for you.
Thanks for your note. No, facial swelling is not common with POTS and suggests something additional going on. Rarely, POTS patients get extreme on the advice to eat lots of salt and get a little swollen from too much salt intake, but that sounds unlikely. Unfortunately, I do not know of a POTS specialist in Knoxville, but some of the best POTS docs are at Vanderbilt in Nashville. I hope things go well for you. -Phil Fischer
I was diagnosed with pots 2years ago i take Bisoprolol 5mg daily. I recently had a post operative examination for elective surgery. My ECG revealed an abnormality and just before i was due to go to theatre the anaerhsitist said it was too risky to go ahead. I now have to go back for further tests at cardiology should i be worried? Can you still have surgery when you have pots?
Hello Janette – We can’t make that determination through this social media platform but I can certainly send your question to Dr. Fischer for a response. Thank you!
Hello Janette – Here’s a reply from Dr. Fischer:
“I’m sorry to hear about your challenges. Typically, electrocardiograms are done with the patient lying down resting, and ECGs of POTS patients look completely normal. It sounds like your anesthesiologist must have found something else concerning separate from the POTS. Sometimes beta blockers slow the heart rate, and we often advise patients not to take the beta blocker the morning of surgery – I suppose your bisoprolol might have slowed your heart rate in a concerning way, but that would be unusual. It sounds like your doctors are wise to check out whatever bothered them about your ECG. POTS does not usually change operative plans even though we often hold (ie, don’t give) POTS medications the day of surgery. POTS patients often need to be vigilant to keep up their oral intake and to get back to exercise as soon as possible after surgery so as not to set back their POTS treatment and recovery. So, those are general comments. Your own doctors would need to see what of all this is actually relevant to your particular situation. I do hope things go well for you. –Phil Fischer “
Dr. Fischer,
At the age of 16, I was diagnosed with “inappropriate” sinus tachycardia and was placed on Metoprolol BID, after having an echo, stress test, holter monitor and several ABGs. They ruled out WBW/SVT, and the like. However, I have also noticed throughout my life that the onset of my tachycardia is almost always synonymous with any quick movements I make, and I have had a syncopal episode before. The same year of my tachycardia diagnosis, I was also diagnosed with IBS and have had chronic abdominal issues since as long as I can remember. I am now currently a PA student in Tennessee and have had time to do so more research on both illnesses. I think dysautonomia is a far stretch, but do you think the tachycardia and IBS could be a manifestation of a POTS-like illness? I have never really had good control over either problem. Thank you for your help!
Sorry I meant WPW.
There is indeed overlap between POTS and Inappropriate Sinus Tachycardia. The key feature of POTS, though, is that the fast heart rates (and many of the symptoms) are associated with switching to an upright position. With the abdominal problems associated with the heart rate stuff, especially if you also have chronic fatigue and upright dizziness, it could be that POTS is part of what is bothering you. Besides increasing fluid and salt intake, getting/staying conditioned with regular aerobic exercise, and maintaining good sleep habits, people with both POTS and Inappropriate Sinus Tachycardia often find beta blockers useful in treatment. I hope things work out well for you and that you, like most POTS patients, find full recovery. –Dr. Phil Fischer
I was diagnosed with extreme low bp when I was 10 and a few yrs later was told it was due to POTS. I am now 24 and have no lessening of symptoms. I was told that I would likely grow out of the POTS as I got older but this has not seemed to happen. I had a sympathectomy(?) when I was 18 to try and lessen the severity of my tachycardia. Have been on beta-blockers for nearly 2yrs and was on fludrocortisone since diagnosis of low bp when I was 10. This year has been particualarly bad, having had CMV and Glandular fever at the beginning of the yr and a general anaesthetic, I have been basically bed-ridden since March. I was wondering if you knew of any DRs who have a good understanding of POTS in New Zealand? I feel I haev seen every type of Dr, many cardiologists, every type of person claiming they can help in alternative medicine and nothing seems to help. I seem to just be told I am very unusual and interesting by most DRs but they never seem to be able to offer me any advice or help. Indeed even among the POTS community here no one has I’ve met as yet has had POTS as long as me and I do seem to be unusual in some way in this. I’m scared about how my body would react if I ever became pregnant, I also don’t know of anyone else who has had a diagnosis of POTS for as long as I have (symptoms of low BP from early childhood, diagnosis at 10) and I’m wondering if maybe there’s somethign else going on as well. If you have any advice regardig POTS and pregancy and also Dr’s in NZ I would be extremely greatfull!
Sympathy to you for your long-term problems.
We see other patients with POTS by age 9 – usually in “early bloomers” who start puberty a bit earlier than their peers. So, you were younger than most POTS patients when you became symptomatic, but you are not that unusual!
Inactivity, whether from infection or an anesthetic procedure or other causes, clearly leads to exacerbation of POTS symptoms. So, the key to your recovery (and I would remain very optimistic about a full recovery being possible) at this point will probably be to get involved in a gradually increasing (but overall aggressive, even if gradual) aerobic exercise program. The longer you stay bedridden, the more difficult your recovery will be.
Some POTS patients seem a bit worse during the early months of pregnancy, but it seems that POTS symptoms actually improve significantly or even resolve during the last six months of pregnancy. Hooray for hormones! (I do not, however, suggest pregnancy as a treatment for POTS!)
Unfortunately, I do not personally know a POTS specialist in New Zealand. The key to your recovery, though, will probably be to get a multi-faceted treatment program going with reconditioning exercise being a big part of the program.
I hope things work out well. Phil Fischer
Dear Dr. Fischer,
Thank you for this informative site and all of your good work with POTS. Could you please help me better understand my situation? Four years ago, at the age of 56, I was dx by my then 24 year old son’s cardiologist with neurocardiogenic syncope. After multiple workups with internal med, neurology, endocrinology and finally cardiology my son received this dx and while in the cardiologist’s office with him I recounted that I had been syncopal & pre-syncopal on & off all of my life. I had also had one ER visit for classical MI chest pain with a normal stress echo-cardiogram 3 years prior to my dx. I am a former RN who had primarily just ignored, developed compensatory mechanisms or “pushed through” these events. He suggested a work up for me too. I have no other history of other medical problems (no diabetes, heart disease, cancers, no thyroid or cortisol insufficiencies). I am a normal weight and BMI. I have been on HRT with an estradial patch for 10 years. I had a total hysterectomy in 2006. In 2005 I was able to run 19 miles and up until 2008 was extremely active, fit and productive.
The cardiologist said that most people my age had just thought they were anxious & primarily sought psychotherapy throughout their lives, which was true in my case. However he explained that “you can’t think enough happy thoughts fast enough” to overcome the adrenaline response to peripheral pooling. My syncopal events had all been associated with heat and/or altitude. I followed his recommendations to drink 3-4 liters/ day and increase my salt intake. I was still able to be very high functioning running my organic farm in Hawaii, obtaining a PhD in education, and working outside 10-12 hours/day and playing with my grandchildren.
Six months after my dx I sustained a rear end MVA with concussion (no loss of consciousness), and 4 disc herniations. I did not require surgery and worked primarily with PT. However, I developed 2x/week migraine headaches with progressively increased syncopal and pre-syncopal events to the point of being put on Effexor 75 mg three times a day. I hadn’t ever been on a psychotropic drug before and while it was an off label use (apparently for the nor-epinephrine effect0 it helped me slowly be able to maintain a blood pressure in a cool (air conditioned in terms of Hawaii) environment. After the accident I had became unable to perform my former tasks on my farm, think clearly, or drive. I was orthostatic with blood pressures changing 20 to 30 mg hg ex 110/66 to regularly as low at times of 68/40. Initially my heart rate would remain very slow in the 50s but eventually I was able to obtain a tachycardia up to 150. I experienced increased bouts of chest pain, extreme heat AND altitude (?!?) intolerance with numbing fatigue. My cognitive capacities were also very diminished, I assume because of under perfusion to my brain.
In the last 4 years I’ve had 5 ER visits and one hospitalization where, although I’d been orally well hydrated IV saline was administered to help raise my b/p. My stress echoes have remained normal. During the resultant fatigue after severe bouts of orthostasis I will have prolonged arrhythmias.
Very unfortunately I have not been able to stay in Hawaii. I am selling my farm and my husband is having to change his job. I am leaving my grandchildren & my life dream of my farm. However now that I have been at sea level with temperatures in the 50s to 70s I am able to progressively be able to exercise more. I drink 1 liter of salt water before arising in the a.m., I wear compressive panty hose and eat frequent small meals (I become hypotensive with large meals). I have been able to decrease the Effexor to twice a day. This, HRT, and vitamins & minerals are all I take. Migraines are less intense and have decreased in frequency to approx. 1 every 6 weeks. I remain extremely heat sensitive, & still experience extreme fatigue with over exertion or large meals. I can think clearly & have no chest pain in the cool weather, don’t fly, and follow the precautions I’ve mentioned. I have had caring smart physicians but now am seeking health care providers where we have moved in CA. I am looking for suggestions in the Northern Central Coast.
My questions for you: since I began experiencing syncopal events as a teenager could this be a progression of POTS or is it likely some other form of autonomic insufficiency? Do you have any comments or insight about why I became so “brittle” after the car accident? Since my son also has this dx but is not as “bad” as I am are there any suggestions you may have for him in terms of taking care of himself? Could any of the resources at the Mayo Clinic possibly help our understanding and care of ourselves?
Thank you again so much for your time, expertise, and reflections.
Thanks for sharing your story – even though your current situation goes far beyond my pediatric perspective. Syncope at our age is often different than syncope in teenagers, and you and your doctors will need to carefully sort through this. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The numbers can be found at http://www.mayoclinic.org/ under “request an appointment.”
I have been watching my daughter literally waste away and become unable to participate in life and doctors can’t help her. I DID call the mayo clinic and sent all information only to be told a week later that they can’t help us. Can’t or won’t? Do not advertise your expertise and offer hope to families who desperately need it only to rip it away from them. There is nothing worse than false hope. What makes my daughter unworthy of your “expertise” ? She IS insured. She has sought all avenues locally. And she is CRITICALLY ill. Shame on the mayo clinic!!!!
Hello, I’m a 36 yo female. I have achalasia and gastroparesis and after 3yrs, have now been told I have POTS. I have not had the tilt table test, but my DR. says all the symptoms fit. Do you have any advice for me? I cannot drink the amount of water suggested or eat enough calories and protein for proper exercise. My main hold-back is that I have a week out of every month that I am sick with dry heaves and air trapped inside that seems to coincide with my hormones even though I’m on birth control to regulate them. It literally afflicts me 24/7, every second of those 4-6 days. Then I am left weak and starved for a week after in recovery. I’ve yet to find anyone to explain this “sick week”. Any thoughts would be greatly appreciated.
Heather, we have received your post. Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this correspondence. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The numbers can be found at http://www.mayoclinic.org/ under “request an appointment.”
My 27-year-old son has been diagnosed with POTS. He first passed out in Jan. 2010. Except for one six-moth period, he has felt very dizzy or passed at least once a month since. His syncope had always been standing up, until this August when it happened while he was driving and he crashed his car. Fortunately, he wasn’t seriously injured, but now can’t drive. Just finding out that many of his other symptoms — tiredness, nausea, etc. — are likely tied to POTS. He is on Midodrine (10mg), but still is passing out. This past weekend, he passed out at a friend’s house and his friend told my son that he appeared to be shaking after he passed out. Could this be some form of seizure? My son had been on Flourienf, but it seemed to have stopped working. He has also had a heart monitor implanted, but his heart rate seems to be ok. The biggest issue is with dizziness and passing out. Any advice on who would be good to see in the St. Louis, MO area? Thank you.
Hi Jeff, Thank you for your question, I will pass this along to Dr. Fisher and will write back to you with his response. Thanks.
Thanks for the note and interesting story. Sometimes fainting is followed by a seizure, but in those cases the medical goal is usually to deal with the fainting without worry about a separate seizure problem. Other times, what looks like fainting was really a seizure-induced drop attack, but that is pretty unusual. It is also unusual, though, that someone with POTS would faint while sitting. It is usually the change in position to being upright that stimulates changes in vital signs for people with POTS. I don’t personally know of anyone near St. Louis to suggest to you, but I agree that ongoing care is appropriate. And, it sounds like your current doctors are doing reasonable for the POTS-Hypotension concerns. –Phil Fischer
My name is Jenny and I’m currently 17 years old. I began experiencing symptoms of POTS in January, 2012. At my first visit to the doctor, I was tested for mono and the test came back negative. A test two weeks later showed that I was in the “recovery stage” of mono. I’m also pretty tall, 5’10″, but didn’t grow suddenly- I went from 5’7″ to my current height in about three years. I have always been a good student, hardly ever got sick, and I’ve always been skinny. My symptoms showed up out of nowhere and progressed over the course of a few months to eventually include daily migraines, constant headache, dizziness, frequent fainting, chronic fatigue, body aches, trouble falling asleep (I can’t fall asleep until 2:00 am most nights even with Ambien or natural sleep aids), and “brain fog” or an inability to think clearly at times. My primary physician, two neurologists, and two cardiologists ordered many tests to rule out other illnesses and my cardiologist diagnosed me with POTS in May. Even with a diagnosis, I’m still struggling with those symptoms. I’m taking 10mg midodrine tablets up to 5 times a day, and I don’t faint anymore (I used to faint every time I sat up). I tried fludrocortisone 0.1 mg tablets (once each morning) but it didn’t help at all. I tried a beta blocker, propanolol, for a while but it made me even more tired in the mornings so I had to stop taking it and never got to see whether or not it was working. Before I was diagnosed, my first neurologist tried about six different migraine medications but none of them helped. He also tried injecting shots of cortisone into my occipital nerves through the back of my head/neck but it didn’t help the migraines. I’ve been sick for a year and I’m still missing school frequently because waking up and getting out of bed is difficult and can take hours. I’ve tried drinking lots of fluids (Gatorade, water, nothing with caffeine), I eat plenty of salt, I’ve tried sleeping with my upper body on a bed wedge so my body can get used to functioning while upright, and I’ve tried compression socks/ leg sleeves. Nothing really helps. I exercise almost every day but it gives me an awful headache and if I work too hard, I’ll be really fatigued the next day. I’m seeing a POTS specialist in Baltimore in mid- February (I live in Northern VA, 20 minutes from DC) but do you have any suggestions for things that I should try? I also have scoliosis (not severe but it causes back pain) and two cerebral cavernous malformations that have each hemorrhaged (not badly), but my neurosurgeon/ neurologist says that those aren’t causing my daily symptoms either. Thanks for the podcasts, by the way. Any thoughts on how I can get better? Headaches and fatigue are the biggest issues.
Hi Jenny, we have forwarded your post to Dr. Fischer.
Thanks for your comments and clear explanation of your situation. It sounds like you have had great doctors doing great things. But, your situation demonstrates that each POTS patient needs individualized care. Even though you have incorporated lots of good parts of care, the details haven’t yet added up well for you. I think the key will be to get ongoing care involving a physician with extensive experience with POTS; making adjustments in your treatment regimen should lead to a more effective balance. Your experience is similar to that of many POTS patients – unfortunately, you have not yet gotten better with reasonable first levels of intervention. I hope things work well. -Phil Fischer
I have never had this problem but I am getting over child birth in July followed by mono and was wondering if pots can make my period late? It is going on two months without on e
We have forwarded your question.
Tough question! Someone other than me (a pediatrician who cares about POTS) might be able to better able to answer this question. In teenagers with POTS, periods are often especially bothersome and irregular – so there must be some POTS-menses connection. POTS symptoms usually improve lots during the final two-thirds of pregnancy in people with POTS. But, I have not heard of post-partum menstrual changes due to POTS. Of course, menses are often slow to restart and irregular following delivery anyway. I hope these comments help, but it would be best if you checked with your obstetrician. -Phil Fischer
I have a daugher that after many test and over 15 years of drs. telling us it was all in her head she was dignosed with pots about 3 years ago soon after she was dignosed she found out she was pregnant and since the birth her pots has gotten worse cant walk very much, headaches, ertreme fatugie, neck and chest pains and now alot of kidney problems. please she is a single mom and we are scared that her kidneys are shutting down what can we do?
Also have a son that was dignosed last year with wpw had an ablation then he lost his insurance, but since the albaltion symtoms have gotten worse heart palatations, sweating, shaking,heart racing at times,chest pains, coughing, headaces and fatuige i am very worried he loves to play sports and keeps pushing his self to do so with no insurance now we can not find anyone to help him. I believe he also has pots we just did not know it but wwe cant even get him tested please HELP. my gradchildren need their parents!
Hi my name is sydney and I’m 13 I got sick in early September of this year starting with extremely swollen lymph nodes and fatigue, an I have only gotten worse since. I originally was tested for Lyme disease and came back negative, I sent the blood work to California to be tested at igenix(?) and I came back with 5 bands positive. I went to see dr Walsh, an she noticed that I had a drop in blood pressure between sitting and standing and had a high heart rate, she recommended that I see a cardiologist. I went and saw dr Abdullah(?), I had a tilt table test done and passed out after about 5-6 mins. He diagnosed me with POTS. We had a really frustrating experience with him we had to wait 4 1/2 hours just to see him for 15 minutes and ended up not understanding a word he said, he put me on a beta blocker and a heart medication I can’t remember the name of( must be what my mom and I refer to as Lyme brain) I have seen no improvement and feel horrible. More recently I went to visit Jemsek and they added neurotin and mepron(ew) to my long list of medications( 27 on antibiotic days last time I counted although that’s including probiotics) my list of symptoms are:
Headaches
Nausea
Sore throat
Swollen lymph nodes
Dizziness
Heat intolerance
Feeling hot and cold at the same time
Syncope
?narcolepsy?
Cold hands and feet
EXTREME fatigue
Droopy and scratch eyes
Memory loss
Brain fog
Extremely sore joints
Neuropathies
Air hunger
Chest pain
Paleness/dark circles
Uncontrollable crying fits
Muscle twitches, spasms, and paralysis
Convergence insufficiency/palsy
Loss of appetite and full all the time
No awareness at times
Low blood pressure
High heart rate
Light and sound sensitivities
I am currently on a medication regimen where I am on medication for two weeks then off for one and so on, on on weeks I take antibiotics on Mondays Fridays and Wednesdays only.
I had to leave school in late September and am now doing class online but even that is beggining to be too much to handle. I have not had any improvement, if anything I have gotten worse. It is suspected that I got Lyme disease in 2007 but never was tested positive, when I had major stomach problems and no one knew what was wrong from 2008- late 2012 I was fine but the doctors think I got reinfected over the summer. This whole experience is scary and exhausting and I would be vary grateful for any insight from you.
Thanks
Hi Sydney, we have forwarded your comments onto Dr. Fischer for a possible response. Thank you.
Sydney – thanks for your comments. I offer sympathy on your struggles and journey through POTS. Your story, though, is pretty typical with a triggering illness and then persistent fatigue with all the POTSy symptoms you mention. I feel for you! Even with good doctors, it can be challenging to navigate the medical system. And, with POTS especially, it takes time to make adjustments and customize an ongoing personalized treatment regimen. IF things are not working out adequately and you want to travel to Minnesota, you could call 507-284-3373 to set up a visit. We’d try to pull a team together to work out the best treatment program for you – realizing that optimism for full recovery is appropriate. –Phil Fischer
I’m 31 now. Beginning very early last year (2012) I started having rare but severe bouts of dizziness and racing heart when walking into work from the parking garage. In late March I was eating dinner at work and afterwards I went into anaphylactic shock (or at the time what I believe was anaphylaxis). As I have anaphylaxis to ants, I immediately injected myself with an epi-pen and waited for the EMTs to arrive. When they arrived I was pale, cold to touch, and barely conscious. They injected me on site with more antihistamines but it wasn’t until they got me into the ambulance and started steroids that I almost immediately felt better. They tested me for allergies to the food that evening and I came back mildly allergic to six of eleven ingredients but nothing that should have caused a shock like episode. My total IgE was around 600 though. They diagnosed me with idiopathic anaphylaxis and basically said there was no way to tell what triggered it.
That month I returned to the ER four times for stomach pains, racing heart, and severe flushing. Understandably, they thought I was having an anxiety attack. A cardiologist eventually hooked me up to an event machine and recorded me driving off the side of the highway with a 183 pulse sitting down. I went into shock on a few more occasions. I eventually saw an endocrinologist who followed the diagnostic criteria in ruling out a pheocromacytoma and he diagnosed me with POTS after doing a stand/sit test and blood work. He put me on Beta blockers.
Almost a year later and I am still having horrible symptoms. Flushing, horrible heart palpitations and tachycardia, dizziness, exhaustion, a complete intolerance to temperature changes and I can’t take the Beta Blockers anymore because A.) They are contraindicated for people with anaphylaxis and B.) My blood pressure is too low to accommodate the dosage they want to put me at. (110/60 on average)and C.) They didn’t work all that well. It cost me one job and is making it very difficult on the one I currently have. (My first job was very high stress.)
I have Celiac (confirmed) and a host of other mild auto-immune disorders including but not limited to Hashimotos (Which I can no longer take medicine for because it makes my heart palpitations worse) and Raynauds, but NOT Lupus. In addition to relatively new seizures, I have hormonal imbalances as well and recently read that the Hypothalamus is a main factor in controlling the autonomic nervous system and hormones.
All of that was to ask … is there a kind of doctor that specializes in all these things together? Should I see someone who can look at hormones or a neurologist? Is there a kind of doctor that looks at both? Getting my doctors to talk to one another is basically impossible. They are all very good at what they do. They just don’t do…whatever this is. Thanks for your advice and for your time!
Best wishes to everyone working through their own struggles! <3
please help i have a 22 year old daughter who is a single mom, she was dignosed 3 years ago with pots she has tried many meds. but they all made it worse for her and now the salt intake is affecting her kidneys, she cant fall asleep until 2-3 in the morning then sleeps till 2-3 in the after noon wakes up for about an hour or two then falls asleeps again. she has bad chest,stomach,and neck pain. cant walk very much major mood swings. she is getting very depressed that she cant spend much time with her 2 year old.
im raelly worried about her chest pains and kidney problems went to a cariologist and they just ask why we were there told us to see her neurologist. what can i do please help!
I am 23 years old and just diagnosed with this condition. There are no doctors here that treat this disease but I am wondering if this is a lifelong illness or if it will go away? I am on Florneif and Metroprolol but it does not last longer. Any suggestions?
Hi Tawny,
I have forwarded your questions to one of our physicians for possible comment. Thank you.
Sorry about your new diagnosis, but I am glad you are getting helpful treatment. Most people with adolescent (or young adult) POTS improve significantly during the first year of treatment, and the vast majority eventually recover completely. Keep up the good work! -Phil Fischer
My 19 yr old daughter was diagnosed with POTS last summer, after two years of crazy, mysterious symptoms, though it is clear in retrospect that she was developing symptoms since she had mono at 13. A friend’s daughter went through IVIG last year, and her POTS symptoms disappeared and her vagus nerve regenerated; has there been more research done since your IVIG comment above (2011) on which auto-antibodies respond to IVIG, and how do you identify if you are a candidate for IVIG? Is it worth trying anyway?
My daughter is a freshman at Macalester, I put her on the Mayo Clinic waiting list last October, but unbeknownst to me, since she turned 19 a month later, the pediatric department canceled her file. No one told me that would happen, I just found out, so I’ve put her on the adult waiting list, and have been told it is up to a 10 month wait.
Elissa, Thanks for the note. We’ll forward your question about IVIG.
Elissa, Here is a reply from Dr. Fischer:
Thanks for your note, and I am sorry to hear about your daughter’s troubles. We still know that a very few rare individuals with POTS can respond to the helpful antibodies in IVIG. But, we still reserve that treatment for those with demonstrated neurologic antibodies who have failed to respond well to regular treatment. Some of the patients elsewhere who feel temporarily better with IVIG are probably “just” a bit dry and would benefit from increased oral fluid and salt intake alone rather than taking the risks of IVIG.
I am a 25 year old male. 6 months ago I was very healthy, but I had an extremely stressful time simultaneous with food poisoning, and two hard hits to the top of the head. I started having constant acid, then stool changes, and abdominal pain behind the last right rib. Then I started having a pressure in my head upon standing and walking around. Other symptoms include 20 lbs of weight loss, chest spasms, extremely cold extremities, intolerance of cold, and extreme sweating. Fast forward 5 months and I started being out of breath all the time. I was in two hospitals for the past 2 weeks, barely able to sit up, and have been diagnosed with POTS and dysautonomia based on symptoms and a change in heart rate from normal to 150+ in some instances upon standing. I can hardly walk to the bathroom and am in a lot of chest and head pain as well as dizziness and when things are extremely bad extreme cold and blurry vision. I have never fainted.
I was put on 15 mg of midodrine 3 times per day and told to titrate it myself based on how I feel. While on it sometimes it will keep my standing heart rate below 100 and other times it will still go up to 130+. It also seems to have significantly lowered my resting heart rate to the 50s/high 40s from the high 60s/70s. It seems like a very high dose and has a lot of side effects for me (extreme cold, goosebumps, increased cold extremities, shrunken genitals, ED).
I have several congenital heart defects (sub-aortic stenosis, coarctation aorta, aortic aneurysm, bicuspid valve) that were fixed as a child and teenager very well and was asymptomatic throughout my life. I have been reassured by my congenital heart doctor that the current symptoms are unrelated based on echocardiogram, EKG, and physical examination. I was told not to be concerned that the chest pain is cardiac related even though it increases with exercise/physical therapy and I do trust him very much.
My questions for the good doctor are: Is 15 mg of midodrine 3x a day a very high dose and is lowering my resting heart rate so much dangerous? Can midodrine cause chest pain? It also seems to have ironically lowered my blood pressure while I am OFF midodrine (at night, early morning).
I used to have terrible daily nosebleeds. I had my first one in 3 years last night in my sleep and upon waking this morning. Is midodrine possibly causing this? Is it dangerous when I already have low blood volume? I woke up 3 times with a headache and sweating and had a high lieing heart rate this morning (80s) for me. Could this be hypovolemia?
I have read many journal articles on POTS and done countless hours of research – is it reasonable to ask my primary care doctor to get me some of the more esoteric tests and what is the best way to approach asking him since I can assume he doesn’t know much about POTS/dyautonomia?
I read of a connection via potassium channel gates of Morfan’s syndrome and POTS. I have never formally been diagnosed with Morfan’s. Is it worth getting genetic testing?
One final thing that was looked into is whether my aortic stent was touching my esophagus and trachea. Some doctors thought it was but my very very good congenital doctors did not think it is. I have to trust them, but is there any past evidence of a change in aortic stent positioning causing POTS or general dysautonomia by touching the vegus nerve, or otherwise? I read your earlier reply about rapid weight loss causing positional change with the aorta…
I know these are a lot of questions. I have really appreciated reading Dr. Fischer’s insights, articles, and watching videos he has made. Answers to any of these would be very much appreciated.
Hi David, We will forward your questions to Dr. Fischer for a possible response. Thank you.
Thanks, David, for writing. I feel for you!
Typically, adolescent and young adult POTS starts after an illness (like mononucleosis), but it can begin after an injury. We have seen a few other people lately who seemed to have POTS develop after concussions. And, “food poisoning” sorts of infections do sometimes lead to irritable bowel syndrome – which overlaps some with POTS. I am glad that your cardiologist thinks the surgical repairs were effective without any leftover problems being due to them.
I am glad you are getting good medical care, especially because weight loss is unusual with POTS. It will be important to ensure that there is nothing more ominous going on. But, your big jump in pulse rate with standing sure sounds like POTS. Weight loss alone, however, can lead to some postural increase in heart rate. It would be extremely unusual for the aortic stent to relate to the weight loss or current POTS.
Different people dose midodrine differently, but I usually only get up to 10 mg three times daily. Sometimes, however, 15 mg doses are needed. Often, incomplete response to a single medication makes me think of adding an additional medication – so as to use both midodrine and a beta blocker together, for instance. Taken before lying down, midodrine can cause headaches (related to increased blood flow) and, maybe perhaps, nosebleeds. We usually don’t take midodrine within three or four hours of lying down.
People with POTS can have chest pain, and good treatment of POTS usually helps the chest pain get better.
I hope these general comments are of use to you (and to others reading them), but I am sure you realize that I can’t really give specific medical advice without more thoroughly evaluating you. I hope things continue to go well with you and your doctors.
-Phil Fischer
I have an adult son who has POTS. What is the current outlook of Clonidine for particular subtypes of POTS? Is this a treatment used at Mayo? I saw it used in some patients with hyper-adrenergenic POTS. Thank you!
Thank you for comment and questions. We will refer them to Dr. Fischer for his review and get back to you with his response. Thanks again!
Here is Dr. Fischer’s response: “Good question! Clonidine is sometimes used for POTS patients, and it is a sensible choice of medication. But, I almost never use it in adolescents so can’t really make any comment about its use. I do hope, though, that things go well for your son.”
My daughter had Complex Regional Pain Syndrome 7 years ago which was thankfully resolved. 2 years later she began developing quite a few symptoms and was diagnosed with POTS (5 years ago). She experienced many POTs symptoms and was also diagnosed with colonic dysmotility and reflux at the same time. She has been on salt, Florinef (.1 twice a day) laxative, Prevacid and scopolamine patch. She had low blood pressure and high heart rate. In the last 6 months she has changed to having high blood pressure along with high heart rate,no matter what position and her dysmotility has gotten worse. She has stopped all salt tablets and has gone off of the Florinef and still has blood pressure ranging from 120 to 160 over 93 to 125. Her heart rate varies from 95 to 125. Is this something that ever happens with POTS or is it possibly something else? Thanks for any insight.
Hello and thanks for your question. In order to provide an answer to your question, we would need to do so in person. You can request an appointment at Mayo Clinic by visiting http://www.mayoclinic.org/patientinfo/appointments.html
I am a 28 YO highly achieving, active and healthy woman until recently. I received my doctorate two years ago and I am working on my post-doctoral Residency program. I just left the Mayo clinic in Rochester, which was incredibly wonderful. However, they found quite a few diagnosis during my six week stay including: Nutcracker syndrome, failure to thrive with significant sarcopenja, diarrhea, dehydration, migraines, blood clots, hypovolemia, POTS, SIBO, Vain neoplasm III. However, two diagnosis of which are giving me an extremely difficult time managing are POTS and SIBO. I have completely changed my eating habits, I keep a food journal and check my no daily. I was out on Propranolol 60mg ER 2x/day to help with the symptoms. My doctor suggested to eat about 3 grams of sodium a day. After reading up on SIBO I cut out most sugar, carbs(like potatoes), gluten, and dairy. It seems like my symptoms are continually getting worse and I am falling much more frequently without warning or reason. I’ve looked everywhere to find a dietitian that could help manage my food intake better but I have been very unsuccessful. Could you please point me in the right direction? Thank you!!
Heather, I will forward your questions and concerns onto a specialist for a possible respose. Thanks.
I am really excited to have stumbled upon this website- not that I want any of you to experience this. I’ll make this as brief as possible. Diagnosed with pots at 18 but concurrently diagnosed with SVT. Pots took a backseat. Had catheter ablation, very succesful. Put on a high sodium diet. Had an amazing 8 yrs of absolutely no problems. At 27 started having severe muscle aches, dizziness, near syncope, fatigue. Went to the ER with severely low pottasium, magnesium and sodium. Diagnosed with gittlmans disease. Treating that has helped but I’ve never felt normal. Fast forward to this year, I’m now 32, had an abdominal surgery in January. I feel like I’m 18 again and not in a good way! Heart races when I stand, I get dizzy, head pounds, can’t stand for long periods of time, adrenaline surges ( oh how I hate those), excessive salivation (? Thought I’d throw that in, you never know)…. So after all this my question. Have any of you ever had a discontinuation of symptoms followed by it coming back and ruining your world? I’ve not got this confirmed yet but it feels so similar to “back then” that I’m seeing my cardiologist again.
HI Kiesha, I will forward your questions onto a specialist for possible response. Thank you.
Thanks for writing. I am very glad that the website seems useful to you. Thanks for “stumbling” on us!
But, beware – you asked a pediatrician for advice related to a 32 year old! Feel free to let your own doctors personalize my comments in ways that are more specific for you.
Almost all teens with POTS fully recover, but rare people do go on to have persistent or recurrent problems. Maybe you are one of those rare ones. BUT, you also have the even more rare Gittelman problem. I suspect that your current issues are more related to your “leaky” kidneys and abnormal fluid and salt balances than to your previous POTS and SVT. But, you should get your fluids, salts, and blood flow issues all checked out carefully. My best guess is that updated fluid and salt management for your Gittleman syndrome will make most of your 18 year old POTS-like symptoms go away. But, feel free to stay in touch to let us know how things are going. –Phil Fischer