POTS Syndrome

beeatrice

I was actually diagnosed with POTS Posterior orthostatic tachycardia syndrome by a tilt table test... horrible test for those like me who have this... When I stand my heart rate shoots up.... I have educated myself about this.... since I have it what specifically did you wnt to know?

dallen4

I was wondering about the tilt table test. I've heard some scary things about the test...passing out, going numb, feeling awful afterwards. I guess I was wonder what all happens during the test....before the test...after the test. Any info would help me get more scared than I already am....but at least I'll know.

beeatrice

Well its not the test itself that is scary because all they are oding is strapping you to a bed and in about 2-3 seconds it tilts you head up, never upside down. To a normal person it doesnt affect them, infact they have been known to fall asleep becasue they considered it to be boring BUT with people with POTS it is very uncomfortable. Befoe they strap youin the start an IV but no fluid is place din your body yet, they doit in case they need to start fluid. They hook you up to a blood pressure and ekg machine.... No biggies so far...then they tilt the table to a standing position and you are strapped in so you cant go anywhere. The minute they tilte dthe table I felt lighheaded and my hear rate went up to 180... This was so uncomfortable.. i felt like I was going to pass out but never did... they left me in the standing position for 14 minutes and for all those minutes my hear trate stayed at 180... then they lowered me back to lying position... For people whose heart rate doenst go up they give them a isoprol? to increase it but since my went high they didnt need to that.... when I wa slying down they started saline on the IV for 30 minutes then they tilted me up again and eventhough myh ear t rate still went up and it went up to 130..... BIG difference! Due to these results I wa sdiagnose dwith POTS...... Very hard to treat and very disabling disease but I am learning eveyday how to cope.......

Just keep in mind as horrible the experince may sound the test is very safe and not dangerous to you, even if you pass out! If you are diagnosed with pOTS I would love to talk more with you about it.. It is a very new diagnosis and most doctors unless they are cardios dont know much about it.. I went to urgent care the other for an arrythimia and told the doc that I also had POTS.. he then said " I just bought the wife a new set of them!"

Anyway Best of luck to you and feel free to ask anyhting else specially if you are diagnosed with it..... By the way, does your heart speed up when you stand? WHere you diagnosed with panic attacks/anxiety disorder/

beeatrice

When is your test?

dallen4

Thanks for the info. My test is scheduled for June 14th and a lot of the symptoms I have point towards POTS. I had 2 separate shoulder surgeries about 8 months apart. Since the last surgery, almost any physical activity makes my heart race and I get extremely hot. At first I assumed that with me being down for so long, not being able to do much after the shoulder sugeries, that I was just out of shape. But I have been an athlete my whole life and still try to play basketball and baseball. But any sort of quick movement makes me so dizzy, short of breath, and extremely hot that something has to be wrong. Now it's happening just doing little housework like laundry or sweeping. I do appreciate your info and would like to talk to you more about this if I am in fact diagnosed with this. I have already been diagnosed with Crohn's but I'm not sure of the severity until I have another test June 11th. I will keep you posted. Thanks

beeatrice

Yes please feel fre eto talk to me about it. I am curious whatyour results will be.... POTS can be triggered by a bad virus, surgery or childbirth.. In my case everything points to the birth of my daughter 2 years ago becasue that is when everyhting started..... Like you I was an athlete all my life.. competed college level in swimming..... I was in perfect health and now people cant understand there is anyhting wrong with me becasue looking at me you see a healthy athletic person which is really frustrating becasue I have found out people have a hard time understanding why the mere act of standing or taking a shower is so difficult fo rme..... If I had a broken leg, for example, they could see why walking or standing would be difficult but not seeing what is wrong has made it hard for myloved ones to truly understand so if you have it I would love to talk to you because you would know what pain this disorder is.....

and boy isnt it aweful to get hot for no reason? I tell you, you dont want to know how much my air conditioning bill is

Seriously though dont worry about the test too much... its a little uncomfrotable but like I said the test itself is nothing to worry about. DO you have someone who can take you and then drive you back home.... I would highly advise on that...... Have you ever been told you suffered from anxiety? Besides cron's have they diagnosed you with any type of arrythimia?

dallen4

One other question that might sound funny. I used to love being outdoors in the summer, but since all this started I can't be in the sunlight for more than a minute or two. I know I mentioned that I got hot really easily but this is different. It feels like the sun is burning my skin! Wasn't sure if it had anything to do with POTS. I've never been medically diagnosed with anxiety, but I'm 1000% sure that if I were tested for it, I would be diagnosed with it. I'm pretty much ultra-sensitive about everyday things that don't bother other people. And I've been to the hospital once for what they said was an anxiety attack. When I had a few EKG's in the hospital, the doc said I had something called bradyarrythmia which a slower than normal heart rate(59). Never heard of it but ok. I definitely will let you know what happens with the test and I'm hoping I don't have it. Well kinda. I need to know what's going on with me and it's driving me crazy not knowing. Did your doc ever test you for other things? Do you have to take any crazy meds with POTS? I hate taking medicine of any kind...even aspirin. Let me know if you get a chance. Thanks

beeatrice

I think I found my twin... you sound JUST like me I use to swim all the time but I dont anymore simply also because I cant stand being out in the sun...my family thinks Im crazy but I feel weak , my heart races and dizzy out in the sun... Yes I also feel like Im burning my skin too Its aweful...isnt? I need to be in shady cool places all the time now.... Its almost like if I were allergic to the sun or heat..

The reason why I asked about anxiety disorder is because 90 percent of patients with POTS are wrongly diagnosed with anxiety and panic attacks since both disorders share the some of the same symptoms.. interesting hugh? Most doc dont know what Pots is since it only has been discovered since 1990's...... most people go on thinking its anxiety when it endeds up being pots!

Bradycardia is slow heart rate.. I have tachycardia...super fast heart rate
I know this may sound insensitive and selfish but I hope you have pots so I can have someone to talk to about it...since it is so new people that have it dont know they do and not much is known about it so for selfish reasons it would be nice to find someone I can relate to but of course I do hope you dont!

Pots usually meds are given- florinef and miodrine (proamatine).. Like youI wont even take regular tylenol..... in fact when I had me kids the docs made me have the epidoral... anyway i have these meds but havent taken yet.. truth is they scare me ..one is a steroid and the other constricts your blood vessels.. verystrong meds that who knows what it will do to your body? Can I ask how old you are? i am curious if pots hits young or old or all in between...

If you do have it and are put in meds maybe well start the meds toegther and compare notes!

dallen4

By everything you've told me about the symptoms, I'm pretty sure we'll be talking regularly because I think I have it. I kinda hope I do too because I really hate not knowing what's going on. When I went to the hospital and they diagnosed me with a panic attack, I tried to tell them that yes I was panicking because I knew something was wrong with me! I may have anxiety but normally I'm pretty laid-back. Just those really stressful moments make my body feel awful. I'm 31 and never had anything wrong with me until I hit 30. In a year and a half I've had 2 shoulder surgeries, pneumonia twice, and now this crap. I know POTS comes on after a major event, so I think I might qualify for that. Yeah I may need some support with taking those meds. It's not actually taking the meds that bother me. I just hate feeling funny or different after taking them. People tell me I'm crazy for not taking pain or cold medicine... but I only get sick about every 2 or 3 years and I've had about 5 headaches in my whole life. I think that's because I built up a resistance by NOT taking the medicines.The one reason I don't want to be diagnosed with this is because I am only 31 and I don't want to live like this for 30 more years. Kinda out of my control though. How old are you and how long ago were you diagnosed? I was wondering about that too...whether it affected people at a certain age. Hope to hear from you soon!

beeatrice

Very interesting! Well I feel like I am 70 years old.... but I am only 33 years old Interesting isnt we are about the same age as this pots got us..... Anyways, like you I was very athletic until this kicked in.. I have a hard time everyday thinking how can I live with this for 70 more years ( I like to think I wil live a long time )

I know what you mean about you partly wishing this is what you have because I knew it couldnt all just be anxiety! I knew there had to be more and that it wans't normal to stand and have my heart rate go off the charts! So when I did find out about pots and that I had it in some ways it was a relief.... now everyone knew i had a reaosn for me feeling the way I had for 2 years and that "it wasn all in my head"......

Like you too, its not the fear of taking meds but how I will feel afterwards... will I feel more dizzy, etc.... I also heard that the meds for pots are design to raise blood pressure so I have heard of peolpe going from 90/54 before meds to 160/100 after meds..... pretty scary stuff too .... guess we cant win.....

I do know I have to increase my salt to 3000-5000 mg a day! where normal people can only eat 2000mg! and of course lots of water.... I mix mine with alittle gatorade or orange, pineapple juice since I heard pineapple helps raise bp..... I think your surgery caused major stress on your body which triggered it The problem with pots like I mentioned is that it is fairly new and most docs dont know much about it.... youll see how you'll end up educating them so docs right now don't really have a cure for it and like my cardio said pots is very difficult to treat and modern medicine doesn't know how long it lasts or of it wil ever go away

But us pots folks I guess must keep going... I think talking with folks who have it helps because you can relate and have a way to vent because they can understand what you go through!

Who is doing the test for you? Is it your cardiologist?

beeatrice

Oops I forgot to answer your question... I am 33 years old and started feeling bad with these symptoms exactly 2 years ago... they diagnosed me with pots, officially, March 2007....... so fairly new to it also butyou cant help to learn about it quickly.... for 2 years they said i had anxiety disorder because when I stood up etc my heart would race..... then they said oops sorry no you have pots and whatever anxiety you might have comes from having pots and not feeling well... in other words, they tell me know that if i didnt have pots whatever anxiety i have would go away.....

I ended up in the ER about 1 month ago becasue i had very low potassium levels..... anyway while I was there I kept asking them for some water,,,,rememeber we have to drink all the time..... but they said while in the ER they cant give you water.. I told them I had this conditionthat requires me to drink water but they still wouldnt budge..... after 7 hours and no water they released me but guess what.. I was too dizzy to even get out of my bed and my heart was up to 180.. the ER doc said I may not let you go now.. I reminded him to get me water and told him I knew why this was happening.... after 4 glasses of waters sure enough I was much better and they let me go..... frustrating when docs dont know what you have.....

dallen4

Sorry but it's kinda nice to know that someone my age actually gets POTS. I was thinking the whole time that it was a disorder that older people got and I was the unlucky one to get it so young. Actually my regular family physician is the one sending me for the test. He's a very good doc who is almost over-cautious about anything. I never asked him but I'm assuming he's already had a patient that's tested positive for it. I had an appointment today to go over my sleep apnea test(which I also have) and he told me that he thought I had POTS from the beginning. We don't have a tilt table in our area so I have to go to the Cleveland Clinic. He scheduled the appointment in the beginning of May and the first available appointment is mine on the 14th of June. I have been counting down the days.
As far as the med that raises blood pressure, I don't think I will be able to have that. My BP is already 140/85 and it's actually spiked at times to 163/105. The only thing that doesn't match up with your symptoms is that standing up doesn't really bother me all that bad. Walking upstairs and things like that make my heart race very badly. I had a 24-hour heart holter test and my heart rate range was 56-140 and the 140 was when I stood up after being on the pc for a few hours....but I didn't feel horrible, my heart just raced for a few minutes. Most of my horrible times are right after eating and at night time. I'm a night owl and I spend most of my nights just feeling awful. I won't have a problem drinking fluids if I have it. I drink about 4 bottles of water and plenty of gatorade every day. I've had GERD for 10 years and my med for that causes dry mouth. My list of illnesses just keep growing and people are going to start thinking I'm just plain nuts. Now I have GERD, Crohn's, Sleep Apnea, and possibly POTS on the way. I'm only 31 and I'm gonna have to go buy one of theose huge pill boxes with the days of the week on it! Do you have any other health problems?

blondy2061h

I'm just wondering why you need to go to a major hospital? My doctor was able to diagnose me right in the office. I took fludrocortisone and thermotabs for awhile, but my symptoms resided greatly, and while I still get orthostatic hypotension and tachycardia once in awhile, I just deal with it and don't need the meds. I try not to change position quickly.

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beeatrice

Its true docs can have a general idea as whether or not one has pots by taking your blood pressure while you sit, stand etc at their office BUT as 2 cardiologists pointedout one cannot be truly diagnosed withPOTS until a tilt test has been done..... thetilt test whichis done in a hospital setting is the only "official" way one canknow if its pot sor something else.... Sadly there are many other disorders that have the same symtpoms such as pots like addisons disease that only the tilt table test can help make that distinction.... his docs like mine probably suspect he has it by the office tests so they are oredering a tilt table test to confirm it .....