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  • Postural orthostatic tachycardia syndrome (POTS)????

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    Old 02-16-2011, 05:30 PM   #1
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    kris85 HB User
    Postural orthostatic tachycardia syndrome (POTS)????

    Hi all - this might be a little long lol but would appreciate any help or advice

    I'm a 25yr old female basically I've been getting a variety of symptoms for the last 2.5years and no one can figure out whats wrong with me! My main symptom is lightheadedness which is almost always present.. sometimes really bad and others days is ok. when I get it i get very tired, confused, headaches, foggy in the brain etc. It mostly will feel better if i lie down but sometimes I still even get symptoms then.

    The past 6months or so I've also had heart fluttering on and off which has been scary and pain on the left side of my chest that comes and goes. My breathing in the past few months has also been a little weird.. i kind of feel like i just cant get enough air in, like im in a really humid room and need fresh air. that also comes and goes but has been more constant lately.

    I have fairly low blood pressurer(not alarmingly low but low all the same) but otherwise doctors cant really diagnose me with anything specific. I've also noticed that sometimes my heart rate seems really low.. but never seems really exceptionally high.. sometimes I feel like all jittery like ive overdosed on caffeine or something but I feel my heart rate and it feels ok.

    I've had an MRI, seen and ENT specialist, endless blood tests, ECG's, etc... and all nothing!! I'm not sure if its relevent but I also get light sensitivity when I get the lightheadedness, even indoors I find I have to squint a lot.

    finally my dr has sent me to a cardiologist as I had a holter monitor and the dr thought my heart rate was a little strange I guess.. resting rate ranged from 47-130. the cardiologist now wants me to have a stress test and tilt table test and has suggested i may have POTS.

    I cant get a tilt test for another month and I guess I'm just getting a little impatient!! I just want a diagnosis, no matter what it is.. after all this time I need an answer!!! So I'm just wondering if this sounds like POTS at all??? I know everyone has different symptoms and experiences but I just wanted some advice from people that maybe have it or know of it.

    It would give me great relief to know what this is.. its a horrible thing to live with and has had a big impact on my life. And Iím sick of doctors telling me its just anxiety or stress.. I know its not that.. ive tried convincing myself it was just to get an answer but deep down I know its something else. would appreciate any help!

    Thank you

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    Old 02-24-2011, 07:10 AM   #2
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    lymefighter HB User
    Re: Postural orthostatic tachycardia syndrome (POTS)????

    My daughter has been through a similar path, cardiaologist, nuerologist, pulmonologist, allergist, gastroenterologist, orthopedists, MRI brain and knees, MRA brain, EKG, ECC, endoscopy, colonoscopy, sonograms etc.

    Also diagnosed with POTS. and also suffers with migraines and gastro issues.

    My advice is go to lyme friendly dr that will test you for lyme and the co-infections. The breathing issues can be associatied with the co-infections. It's been a challenge to put the pieces together and many of the specialist are very reluctant to attribute this to lyme. It is difficult to know what came first. Once you have a positive diagnosis you can start treatment. There is a lot of trial and error involved. We are at the beginning of treatment now. It's one step at a time. Eventually you will get better. Good luck.

    Old 03-31-2011, 12:12 AM   #3
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    Re: Postural orthostatic tachycardia syndrome (POTS)????

    hey, do you know if your heart rate increases when you stand up? The classic POTs signal is your resting heart rate being normal (anywhere from 60-100BPM) and increasing at least 30BPM upon standing. I may be getting a diagnosis of POTs also as my heart rate increases about 40 BPM when i stand up and i have similar symptoms as you.
    < edited >

    also, POTs doesn't nessicarily involve blood pressure changes- some people with it have drops in blood pressure, some people have increase, and some people have no change. It's usually diagnosed solely on heart rate from supine (resting) position to standing.

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    Old 05-05-2011, 03:29 PM   #4
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    potschick HB User
    Re: Postural orthostatic tachycardia syndrome (POTS)????

    I have pots. Sounds like you do too. I take Midodrine and have been seeing a cardiologist and a neurologist. I hope your symptoms dissipate, as I believe they might. Good luck.

    Old 05-15-2011, 09:49 AM   #5
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    Re: Postural orthostatic tachycardia syndrome (POTS)????

    4 or 5 or so years ago, after passing out several times upon standing, episodes of tachycardia where my heart rate gets so fast no one can count it (my best guess is 180-200), and almost chronic lightheadedness, I was tentatively diagnosed with orthostatic hypotension. I've always had BP on the low end (systolic below 100), and my cardiologist decided to put me on Atenolol (a beta blocker). It seemed to help with most of these (though I still often feel lightheaded and disoriented, I have only lost consciousness maybe once since being on it). Finally, when I was 19, he decided to do a tilt table test, since I was still unhappy with the way I was feeling. The first tilt was inconclusive, so they decided to inject me with a drug that would "help it along." The side effects they told me were horrible, and I ended up having a panic attack during the procedure. Long story short, I'm pretty sure he thinks my episodes are just panic attacks now, even though I know they are not (completely different feeling). I've stayed on the Atenolol, and haven't seen him since (I'm 21 now).

    Now, I only have bad episodes when I don't take my Atenolol, when I'm trying to repress a lot of stress, or when I get dehydrated. I've thought about going back, but I've been hoping that my PCP will find a miraculous diagnosis that will cover all my numerous issues. And before I'm asked, yes, I had Lyme as a kid, yes, I made her test me recently, and yes, the tests were negative.

    My advice to you: Don't give up. My mom used to pass out as a kid, but she grew out of it by the time she was 20. I haven't, and you may not either (at 25, you technically still could). Testing requires some patience, but if you want a diagnosis at all, you're just going to have to stick with it. I went through all the monitors, holters, etc, and it sucked. Unfortunately, I get migraines, so they have to be careful which medications they give me, since a lot of cardiac meds can also cause migraines. Be patient, but also recognize the possibility that the test may be inconclusive. I thought my tilt table test was going to be the magic answer, and went into a long period of depression afterward, because it was inconclusive and I felt like I had screwed it up.

    Eventually, you'll find something that works, learn to cope, or get a diagnosis/treatment. I know it's frustrating, but just hang in there!

    Old 09-21-2011, 01:01 PM   #6
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    ezim77 HB User
    Re: Postural orthostatic tachycardia syndrome (POTS)????

    I also been dx w/ pots! They cant find any underlying problems and dont know what caused mine. I had no preg., trauma or illness. Any advice on what to do next or what to look for? Has anyone of you got better? This is crazy!

    Old 10-13-2011, 01:42 PM   #7
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    corinne7760 HB User
    Re: Postural orthostatic tachycardia syndrome (POTS)????

    wow goodness me! you say you saw a ent,did they do a full hearing test? notjust if you can hear a noise good,but the exam that they put you on a tale and you look foward to see thred lights hat are on a bar go from lft to rt.then up and down..where they lay you down and you puto these goggles and they test you by showing you a spot on the ceiling and then they block it out...this has more to it..but the part i want to ask ,did they use the instrument that is like the one to look in your ear..well they hook it p to air,and first they put it onCOLD air then they put it onHOT AIR...there is a bit of wind in it so they can determine if you have a inner ear knocked me on mybutt...the other thing i think you shouldlook into is a "TRIGEMINAL NERVE COMPRESSION"...please this is often never diagnosed...use the web,thats how we got here...good luck,its no fun!!!!!!!!!!

    Last edited by corinne7760; 10-13-2011 at 01:44 PM.

    Old 10-18-2011, 06:29 PM   #8
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    Re: Postural orthostatic tachycardia syndrome (POTS)????

    I have POTTS. I have other things, too. Lymes, Fibro, Chronic Fatigue. Just to function I take stimulants, which makes my heart rate fluxuate from 50 to 150 with a bp average of 80/50. Low blood volume causes your heart to work harder to pump harder. Sometimes my heart is pounding so hard you can see it from across the room. I really think this is the key to the problem but I don't know how to fix it. Drs won't listen. One thing that helps me is to drink at least 3 quarts of water a day. AND eat salt; which I crave. If you skip a day of not getting much; then the next day your body will tend to retain the water; because it was lacking the last day and goes into "camel" mode; I suppose. I have to drink water before I get up out of bed. I've started drinking the electrolyte water (without the sucralose because I'm also hypoglycemic) at least 16 oz a day. Good luck
    Wishing you all lots of good a row.
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    Old 12-14-2011, 07:29 AM   #9
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    Russcal88 HB User
    Re: Postural orthostatic tachycardia syndrome (POTS)????

    Hi, like you said everyone has different experiances but your symtoms do sound like you suffer with POTS syndrome.
    Although, like myself, you just want an answer to what you have wrong with you and to finally know its not all in your head, POTS is a very difficult thing to live and have a normal life with.
    It takes alot of time and tests to finally get dianosed so hang in there.
    Wish you all the best

    K x

    Old 01-10-2012, 04:08 PM   #10
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    leoners HB User
    Re: Postural orthostatic tachycardia syndrome (POTS)????

    HI there.
    Last summer I was admitted to hospital after having three blackouts for no apparent reason. I had alot of symptoms you have described beforehand tho. ..The jittery feeling like overdose on caffeine, cloudy head, dizziness, slight confusion, extreme tiredness. They originally thought i had a heart murmer in the hospital but after a heart monitor and some tests on my heart they ruled it out, they too put it down to pots...

    I do know at the time tho I was extremely stressed out with work and was suffering anxiety and panic attacks which i def contribute to the problem .
    I have changed my work situation,I have cut out coffee,stopped smoking and ALWAYS eat breakfast as I found the problem was a lot worse when my blood sugars were low.also on the recommendation of my doctor I incresed my salt intake to raise my blood pressure a litlle and i try to stay hydrATED
    i have to say i feel 95% better and i hope this helps you

    Old 01-10-2012, 04:15 PM   #11
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    Re: Postural orthostatic tachycardia syndrome (POTS)????


    I was diagnosed with pots and i have to say i had pretty much same symptoms as you, jitteriness, tiredness, dizziness,heart flutters, and i also find it hard to breathe sometimes but i never connected that to pots strangely enough.

    I had three blackouts last may and was admitted to hosp where i had a heart monitor and and an ecg and other heart tests,they thought it cud b a heart murmer but that was then ruled out and they put it down to pots. I was extremely stressed out with work around this time and was suffering from anxiety,panic attacks and insomnia which i think all contributed

    I cut out coffee,cigarettes,increased my salt intake, drank more fluids and ALWAYS eat breakfast bcause i found the problem was always worse when my blood sugars were low. I also took a step back at work and reduced my stress levels significantly and im pleased to say im feeling 95% better.

    I think i was putting too much pressure on my body.

    I hope you find this helpful

    Old 08-11-2012, 07:16 PM   #12
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    Re: Postural orthostatic tachycardia syndrome (POTS)????

    Sounds like it, I went through three months of doctors experimenting on me, actually made me sicker, until I finally went to Mayo Clinic and they did the sweat test and tilt table test. That was about 6 years ago. I have tried the high salt, high liquid, and now finally had to go to compression pants to try and not take medication. The list of side effects and the other parts of taking Florinif which is usually the first thing they would prescribe but.. it is a steroid and your body becomes addicted to it and has to be weaned off very slowly after 3 weeks plus a lot of other bad stuff that can go wrong. Anyway I am now 42 and male. My POTS is daily but it runs in streaks of just ok to really bad. I have managed to continue working through this and trying not to let others know I feel like I am dying at times. Right now is a bad week, I was a teacher and coach fo 10 years, took a new job as director of a museum on an interim basis, ended up setting a 37 year records for admission, needless to say they want me to stay on, work year round, and this summer was horrible for me with it being 90 degress plus almost everyday. I managed to get through it with some understanding coworkers. My bp jumps around like crazy, sitting it is usually like 101/68, pulse around 60-70, stand up has dropped as low as 65/50 with a pulse of like 134. Well, last night I took my bp and pulse while lying down. Usually it is my first number that drops like a rock standing, well while lying that was great but my second number went down, and my pulse rate was at 42. Its just crazy... tired, headaches, dizzyness, anxiety, the list goes on and on. I have been trying to lead a normal life now since being diagnosed but found it to be impossible. You either suffer through things or you don't do certain things. My body temperature is always out of whack. Usually low like 97 then out in heat for a little while goes up to 102 in a half hour. It is so damn frustrating... I wish you luck. At least doctors are becoming aware of it but really don't know a damn thing about it, other that the symptoms, not really how to manage them, each person is different. Not sure on cause, all kinds of theories.

    It can become a lonely life as I have really cut back on my social activities and all the things I used to love to do because I just cant do them (competitive athletics ...) I was first diagnosed with an anxiety disorder and depression, now they believe that this is actually a part of POTS and the autoimmune/nervous system effects. Now they have me hooked on anxiety meds as I have tried to wean off them and get so sick I cannot function at all, so just went back on them. I couldn't sleep, eat, or anything from the withdrawals even when weaning off slowly. (and the meds say they are non-addictive) ********! Anyway, I hope you have some peace of mind once you get your test, I had every test done on me, come back normal, yet felt like crap. Unfortunately, you might have a long road ahead of you if it is POTS because it is definitely life altering no matter how much you try and fight it. Sorry for writing a book here! Good luck

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