Comments and reviews on article "Postural Orthostatic Tachycardia Syndrome (POTS)"

I was diagnosed at the age of 22 (im 23 now) and i had been experiencing signs and symptoms since i was very young. i have other cardiac arrhythmia conditions including SVT and mitral valve prolapse, and have had two heart caths (at age 11 and 22). it was after my second cath which was unsuccessful that i was diagnosed with POTS. I actually have an ok time dealing with the condition i think because I have lived with the symptoms for so long that im sadly used to feeling "bad" all the time. I take florinef now and it does help. I also am supposed to eat 5g of sodium everyday and i drink at least one gatorade a day. I work as an EMT full time and am able to do most things without having bad symptoms. I think its something you have to eventually adapt to. I work out with heavily with weights under the supervision of a personal trainer who is knowledgeable about my conditions and do pretty well with it. to those of you just diagnosed or are just now experiencing the symptoms...you will get there, you will find a routine that will help you deal with the symptoms and will be able to lead a normal life again. Dont let your mind bring you down, this is just like any other disease that you must learn to overcome and i believe you will. keep talking to your doctors and it may take some time but you can find the right treatment for you. Hang in there people! to allenke: i have the same worry. Ive had doctors say absolutely no pregnancy and i have had them say its fine...and everything in between. so im with ya girl! me being the bullheaded person i am, ill probably try and have kids eventually. if you all have any questions for me email me at and put POTS in the subject line. Im forever researching this condition and finding new facts all the time. So get at me! love to you all and good luck

I am in the process of being worked up for POTS after a lumbar epidural injection, in which there is "No CSF leak by spinal MRI." I am trying to get a blood patch to rule out CSF leak...I have never had heart rate problems, am 35 y/o female and am absolutely terrified of this! Thanks to Guest for the positive info, it is the first out of 100's of bad reviews so far. My supine HR is 98 (used to be 70), sitting HR is 120, and standing is 140+... I am so symptomatic and want a diagnosis fast, to get on some beta blockers or something, to help me get my life back! Have you ever heard of a CSF leak with resultant postural tachycardia? I am so confused! Yikes
Thanks in advance for any info you guys may have...

I am female 29 years of age, (30 club March) o.O and was diagnosed with POTS last month. After 16 years of tests, being rushed to hospital with Sinus Tachycardia on several occasions, blacking out, palpitations, constant dizziness, always tired (sleeping up to 12-13 hours) and still being tired. For years and years medical staff said it was anxiety, I was constantly questioned to see if I was "depressed" and prescribing me anti-depressants, which I never took. And now I have POTS, first thing I done, which I think we all do is to "Google it" and I was almost pleased to read about it and to see that I am not the only one. The doctor told me it is something that is not life threatening, there is nothing we can do to stop it, However there are preventatives and of course medication. so basically I have to live with it. See the thing is I HAVE LIVED WITH POTS FOR 16 YEARS. I know what can set it off and how to deal with to an extent. Even though 9 times out of 10 I feel unwell or not right. I am lucky though I have a job, a 10 year old daughter and a half understanding partner (chortle). My question to any of you is: have you been prescribed with medication and what are the non-medical things your doctors told you to do and has worked. My doctor told me to drink between 8 - 10 pints of water a day, wear lycra stockings if I am going to be on my feet for a long time, do 40 sit-ups every morning and every evening, avoid prolong standing in "uncomfortable conditions" warm environment, cut out coffee and other stimulants. But this is what I want to know has anyone been prescribed Midodrine? I am currently on my third week of 2.5mg and next week I have to increase it to 5mg. I have had a headache for a week, I am more aware of my heartbeat and it seems to be fluttering quite a bit as well. I am now wondering if I should up the dosage and see how I get on. The last thing I want to do is for this to effect my job as so far I have managed. I am in a dilemma do I continue to take Midodrine or deal with it?

Hi there. I was diagnosed with postural orthostatic tachycardia syndrome (POTS) at the near-completion of graduate school (I only had a few weeks to go), at a physician assistant program in Fort Myers, Florida, when I was dismissed from the program based on what I now know to have been symptoms of POTS. Unfortunately I had not been well-schooled on the full and at times completely debilitating symptoms experienced with POTS, and therefore thought what I was experiencing was something I could "fix" or "un-due." After many sleepless nights, and even more days spent tirelessly searching for answers following my dismissal from the program, I have begun to gain some insight into this condition, but am left wondering where else I should be looking for current and up-to-date information on dysautonomia and POTS. If anyone has any suggestions for good resources as I continue on my quest to learn more about this condition which has wreaked so much havoc on my life I sure would appreciate hearing from you! Thanks so much!

Hi Everyone! I am 24 and I was diagnosed with POTS in January after 2 years of being treated for Mitral Valve Prolapse. I have an 8 month old baby boy, and oddly enough i had very few symptoms while i was pregnant. I actually felt better pregnant that i had in a very long time. I dont really fit into any of the "Grades" of the condition. I have symptoms pretty much all of the time, but i am able to make myself stand. My husband does not understand and i dont think he ever will. My cardiologist calls POTS an annoying pain in the neck. He doesnt have the condition and everytime he says that i want to slap him. The Dr. just put me on Bisoprolol and it has given me more good days, but it has also made my bad days all but completely debilitating. Has this happened to anyone else? I am trying to stay positive because i know my condition is a lot less severe than it could be, but it is really hard when no one else gets it. Any advice and how to help people understand would be greatly appreciated!

Thanks guys!

I work for a chiropractor. We have a patient that we have been treating for POTS, and we are getting GREAT results. If you know of a GOOD chiropractor, please check with him/her and see if you are a candidate. If your POTS is being caused by a problem in your nervous system, that is a great treatment option. Hope this helps!

i delveloped pots in july 08. I have not had any luck with medication it seems to just lower my blood pressure, so I dont bother with medication anymore. I go for Acupuncture treatments. I go once a month and that helps lighten my symptoms. Acupuncture is amazing I have improved.

pots is terrible had it for 3 years since my second child born only getting worse. medication not helping!

This diagnosis sucks! i hate it! >;) i was diagnosised about 4 months ago and from then on it has gotten worse.. :-( i cant do anything without all the symptoms getting in the way.. its hard to sleep and to stay awake. its hard to maintain a job and sports while going to school 5 days a week. i also pee on myself very regularly it is very embarrassing. i pee on myself while im at school and everywhere else it is very uncomfortable to go somewhere hoping u dont pee on yourself. i do this cuz of my meds. they put me on lexapro 10mlg and for what i dont know!!! its a anti depressent and im not depressed im just sick and tired of being tired and not being able to live a normal life.. i quit taking my meds cuz they are pointless and they dont help.. now im coping with this syndrom on my own trying to make it to my next appt. which is a month away ! and i dont want to wait that long.. well i did a tilt test and it came back suspisious and they told me they dont know what i have but until we figure this all out.. i have pots for now and if this is pots it sucks.. i want to get rid of it asap! please someone help!

i hear you there,i am a grade 2 pots suffer and it is slowly get worse i know more about this disease then most doctors i see, so its no help to me. i find most day to day things hard most day to do i an tied most of the time. I do all taht i can to prevent it getting worse and thats all can do. we must never give in to it.

Go to and order the free video. It will explain everything you ever wanted to know about POTS. Except what to do when you have POTS and get pregnant. My daughter's dilemma right now. What meds can a POTS patient safely take without harming fetus? Common drugs to treat the symptoms of POTS are: Propranolol, Florinef, Effexor, Mestinon


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I was diagnosed, after fifteen years of unexplained symptoms, with POTs. I don't get any support from my doc who thinks it is untreatable, so here is what I have done to help myself. I have learnt to treat it with water. I drink a lot. I also exercise a lot. I do not take excessive salt as I find it can dehydrate me. I also eat early at night and try and avoid heavy meals. If I am particularly hungry I eat in stages!
Problem is I worry that I am leaching minerals from my body with all the water, so I take care to drink and eat products with calcium and magnesium.
Mostly I manage, but it would be nice if my doctor took more of an interest...

Hang in there. I have had POTS since I was 16 (Im 28 now). The doc put me on Adderall 10 mgs once in the AM and it has really really helped. Maybe you could ask your Doc about that. I still have some symptoms, especially around my "time of the month".

potsmom:

I am 5 weeks pregnant with twins and I have POTS. They are sending me to a high risk OBGYN and said I can remain on propranolol until I see the doctor at 8 weeks. I do not know what I would do without my medication. I am worried about my safety during pregnancy, will my heart be strong enough to pump enough blood?? No one seems to know since there is not enough scientific evidence for POTS. I am already started to feel a excelerated heart rate at 5 weeks for the past 4 days at rest. I am resting about 85-100 and that is ON my beta blocker. My normal rest on my beta blocker is 60. I have become a orisoner of my own body for several years (I am 27) and the propranolol all but saved my life.

Im seventeen and i have had pots since i was thirteen, starting out at a grade 1, but didnt know what it was until this last year ive been very sick, not able to do much of anything, and they have been studing me, finally realizing i had pots. They are starting me on propranolol on friday and im really not sure what to think. at rest im about 145 without the beta blocker. he hopes to lower it to atleast 100. But i have also been told i have adhd and need adderall? the cardiologist said thats normal with pots, but adderall isnt good. and i should stay away from caffine. Im always tired and caffine is all that keeps me awake. What should i do?