Tilt Table Test

The idea of knowing you’re going to have one of these can be pretty scary!  You don’t know how this may effect you symptom wise, and no one likes being forced to be at their sickest.  So I’m doing a quick run down of my tilt table test experience so you have a little idea of what to expect.  Different hospitals do it all a little differently, but it’s all basically the same, and looking for the same ending result.  If you’re reading this, and your experience has been different, please post what was different below so readers will have more of an idea!  Also, when on the tilt, people’s bodies react differently, this was strictly what happened to me.

To prepare, I was told not to eat or drink anything 12 hours before the test.

I was brought in and laid on a regular hospital bed.  I was given two IV’s.  One, to draw blood from, which they do once I’ve been there lying for a while, and the second one is to inject you with an adrenalin boost to get your symptoms going, if they don’t on their own when your doing the test.

tilt table test

They wheel me into this other room that’s pretty big and all these interns are running around.  It seems a little uncomfortable at first, but they are more interested in what comes up on the computer, than what you yourself is acting like.  Just ignore them.

You’ll be moved over to this big gray metal bed, but your bedding goes with you, and is a lot more comfortable then it looks.  They put the electrodes on you and the blood pressure monitor, so they can watch your blood pressure and heart rate.  The machine was to my left, so I was able to watch it too.

I had little straps that looked like small car seat belts brought across my thighs and upper chest.  There’s a little give, but tight enough so that if you do end up fainting, you won’t fall and hurt yourself.  I was still able to move a little bit behind them, so it didn’t feel constricting.

Then they slowly raise you up so you are in standing position.  I did not need the adrenalin boost in the IV because mine soared from the moment I was placed upward.  I was in no pain, but I became very emotional quickly which is very common when your adrenalin goes high on its own.  I got a little teary eyed at first, and then after a couple minutes I was back to normal.

I became very weak and dizzy, but never fainted on the tilt table.  I felt very out of sorts, the way we do if we are standing normally, but I found personally, because I had the table behind me, I didn’t feel as bad as I could have, because I had something holding me up instead of my just free standing like usual.

Once I had been up about 30 minutes, they took more blood work out of the first IV.  I have a problem with doctors getting a vein let alone a lot of blood coming into the vials… but with my blood pooling from the test, the blood work went great for once.  Now I have a new trick if the doctor’s are having a problem with getting it.  Just stand up!

After about forty five minutes I was slowly laid back down into a laying position.  The straps were removed, and I was moved back onto my hospital bed, and rolled back into the other room where I had to rest for a half hour.  At the hospital I went to, they do this because if you had the adrenalin boost, they want to make sure you are recovering from it okay.  Since I didn’t have it, I didn’t have to wait as long.

A doctor comes in, and tells you the results.   Usually an intern, and then the Cardiologist will come in and tell you if your have POTS, and to drink lots of water, get up slowly, and eat more salt.  Usually you will get a prescription then too if you are diagnosed.  And then I was sent home!

Like I said, little things are done differently in different hospitals, and depending on how your body reacts on the tilt table.  Some doctors try to keep you there until you faint, some will bring you up and down continuously on the table to try to worsen symptoms.

If you have any questions, or any variations to the tilt table test you received, please post below!


99 thoughts on “Tilt Table Test

  1. My experience was different, and not in a good way when it came to getting accurate results and expert advice on how to better manage my dysautonomia symptoms.

    1) I had eaten lunch about an hour before my test and I had coffee in the morning. I also wasn’t taken off my beta-blocker for several days before the test. It is for all these reasons that I am going for a second evaluation with a different doctor in a few months, because I do not think I was prepped properly.

    2) I had a sweat test and a deep breathing test done before the tilt table test. I actually almost passed out from the sweat test, which I though was significant, but the MD did not.

    3) I was raised suddenly and quickly from laying to standing and remained in the position for about 10-15 minutes. I felt a little dizzy and weak initially, but my body seems to compensate–perhaps because I was on my beta-blocker. During the test, I had some fluctuations in my blood pressure, but only modest changes in my heart rate. But again, I don’t think I was prepped for the procedure properly (see 1.)

    4) Because my test results were only marginally abnormal, the most disappointing part was not getting a lot of recommendations and suggestions for managing my symptoms better, which is why I went for this consultation and agreed to this test.

    Wish me better luck next time…

    • ty for sharing your experience! I agree, that they didn’t have you prepped properly, which is sad bc it’s not like we want to have a second one done! I hope the next one goes better than the last!

  2. I just had a tilt table test done today 2/23/11. at 11am first off my blood pressure was 155/101 second bp, 170/103, third 173/102.
    They strapped me in put in IV then stood me upto 70 degrees for several min. then they started the IV to make my heart rate go up to see if they could reproduce the same effects that i have as an out- patient. this went on for i think 15 min. i could tell my heart rate went up tingling in fingers ect… got light headed but, did not pass out, black out, ect. but i did feel light headed like i was going to but didnt.
    after like 35 min. they stopped the test and the doctor told me everything looked normal…
    I have had these ” Events ” as i call them .for 10 years + i have admitted myself to 3 different hospitals and get pretty much the same results. i have had (halter monitors, EEG’s, doppler , echo, ultra sound. ) done and it seems that everytime i have a test its like my symptoms disappear. and when i return home within 1 /2 days i have an ” Event ” like clock work.
    the doctor said if i wanted to persue this further to contact him and he would possibly order another EEG,Monitor, Ect… but i have been there done that.
    he also said even tho he cannot diagnose me POTS he could still treat me as if i have POTS and perscribe me medication for it. Now whats that saying about the tests & Procedures they do?
    i cannot afford to go to the doctor without insurance & since i have not been diagnosed with anything i cannot get medicare/medicaid without a diagnosis???
    Please Help Anyone ???
    Thanks for your time…..
    What i would like to know is ? What is the next step i have heard that the tilt table test is not completely fool proof and there are other tests to perform but what are they? I fear for my own lif As well as others around me , God forbid i have an ‘”Event” in my Car it would not be good…

    • I just saw this and I’m sorry I didn’t get to you more quickly! I agree, my body always tends to be more agreeable at the doctors then at home! Which was why it took me 7 years to get diagnosed. To have an accurate diagnosis your heart rate has to raise from laying to standing, 30 beats per minute higher within I believe 15 minutes of standing. You can, when you feel an episode, do the poor man’s tilt, and do it at home and bring your findings with you to the doctor (make sure you have someone close by at home to catch you if you fall!) But you are not getting the benefit of a doctor seeing it first hand,nor are they getting the blood work results. BUT if your doctor is still willing to treat you and you have seen first hand it doing the pots dance, I think you should get his help. I was put on monitors too and they didn’t catch anything at all so I don’t believe they do too much either.. I have a page full of tips for potsies on here and they’ve really helped me for things you can do at home. ashleypauls@hotmail.com if you want to email me personally, just put word press or pots or something so i recognize it in the junk mail folder. Best of luck!

    • How old are you if you don’t mind me asking. I have POTS as well and I am 16. I am doing a research math paper on POTS numbers between adults and teens. If I could use your numbers you mentioned here that would be awesome! I won’t use your name, I am just using the numbers to compare! Thanks (:

  3. I am 14 and have just gotten diagnosed with POTS and RLS. It stemmed from a head injury in ’09 went away in ’10 and came back to get me this year. I’ve gotten a thousand times worse. Luckily, I CAN still play volleyball and function to go to school. Which I know is pretty impressive.
    I have pretty much every symptom of POTS. (Lightheadedness, dizzy, tired, chest pains, tremors, chronic daily headaches, I am super sensitive to heat and cold. Our family jokes around that I have a wacked out indoor thermometer.) I drink 6-7 water bottles on average per day and eat sooo much salt… I constantly crave it. We’ve been dealing with this for not too long but we got tipped off about dysautonomia somehow and looked into it. Then we started taking my pulse when I was standing for awhile and felt like crap. It was high. I saw both neurology groups in my city (a rather large one at that) and neither thought of POTS. Discouraged, we did a little at home experiment. I was sitting on the couch on a horrible day and took my pulse. It was 66 bpm. I stood and took it right away. 108. Then I waited 5 mins and took it again. 114. Another 5 mins and it was 126. Thats a 66 beat difference! All it took was one look from a neurologist at Mayo to say I had POTS based on that. To be diagnosed with POTS I’ve heard anywhere from a 20-30 bpm jump in 10 mins, I did not do a table test.

    • wow it’s crazy they didn’t have you do a tilt test, but nice too that they didn’t put you through it! i’m sorry you’re so young and feeling so sick! they say the younger you are being diagnosed, the more likely you are to grow out of it, so hopefully that will be the case! i’m glad to see you can still do some of the things you love like volleyball!!!

  4. I had a Tilt Table Test yesterday and it was sooo incredibly hard!
    My test was at 3PM (even though my symptoms are a million times worse in the morning) I was told nothing to eat or drink for 4 hours prior to the test 1.5 hours before the test i forgot and has a cup of water…Grr
    They laid me on the table and strapped me down and put a BP cuff on both arms and tested my BP and they put an IV in but just the saline lock for the meds they would give later. They also put a 12 lead on me to measure my HR.
    Then they stood the table up and told me I could not move my legs or feet at all and that I would be standing there for 45 min or until I faint.
    Oh man! Immediately my HR went way up and stayed between 119 and 143. It went up to 143ish then back down to 119ish in cycles that correlated with symptoms from me of hyperventilation. I also had intermittent heart flutters and palpitations. It was so uncomfortable and at 12 min I just wanted to quit, but I kept going. My BP remained pretty steady but fluctuated between 97ish/57ish to 111ish/72ish. I felt as if I were running a marathon even though I was just standing still.
    After 45 min they laid me down for 5 min and let me stretch which is great since my feet and hands were purple and swollen from all of the blood pooling!
    Then they put the Iso stuff in my IV to make my heart rate increase and stood me back up for 15 more min. My hands went numb (ants crawling and all) pretty much immediately and they said that was from the meds and my HR fluctuated between 143 and 175ish, but it was much easier for me to stand that time because I didn’t feel the constant hyperventilation! I did have some dizziness and sweating this time with some breathlessness.
    I felt as if they thought everything that was happening with me was normal, but it is NOT normal to be standing leaning against a table at that and feeling as if I were running a marathon with breathlessness and heart palpitations and flutters and a very high heart rate!!! They said it usually takes a week for the test results to be ready! Will let you know what they say.

    • Make sure to let me know how it turned out! Very strange, but love hearing other people’s experiences going through it, bc depending on the hospital, they do it differently everywhere! I was told the results within minutes of being done the test and back to a normal bed. I wasn’t given anything to up my HR thankfully! They said they didn’t though bc I was screwy enough without out it lol. Glad it’s finally over with and you can hopefully get on with getting actually taken care of and healed as best they can!! *hugs*

  5. Around 4 months ago
    i was driving and suddenly i feel really extrane it was like some put my hand, arms in a bucket of water with ice, my heart was heating so fast that in feltni was losing concience, i started having problems with my vision . everything was so fast until finally i could pull over and try to call someone to let them know where and what was happening to me.. i was skacking and sweting so was very difficult to use muy phone.. whivh increase more my anxiety. I went
    the neurologist just finished the Tilt test, I was very anxious what to expect during the test. I was simplicity afraide to feel again the episode, I know it could be the best so they could help me, but at rhe same time

    • It’s very scary to think of putting yourself through something like that again, but my case I felt it was worth it. I was also upright on the table, but I felt myself leaning back almost against it, so I didn’t feel my symptoms so extreme as I normally would have. Driving can be very scary for a potsy!

  6. Howdy just wanted to give you a quick heads up. The words in your post seem to be running
    off the screen in Ie. I’m not sure if this is a format issue or something to do with browser compatibility but I thought I’d post to let you know.
    The layout look great though! Hope you get the
    problem resolved soon. Cheers

    • Hmm thanks for letting me know.. what are you looking at the page on? A PC, device, etc.? I am looking at it on my home PC and don’t see any problems with it.

  7. I had the tilt table test in December 2012. I had been having near faint symptons. Because of the BP monitor and the EKG I could see what was happening. My BP was going up and then my heart rate slowed down and I blacked out at 10 minutes without getting dizzy or seeing spots or hearing a buzz. I was shocked that it happened so quickly.
    I now realize I have had this for many years without knowing what it was cause the episodes were so far apart.
    There is a support group on Facebook now: Living with Vasovegal Syncope and it is a real help. Lots support and suggestions on what to look for in triggers and how to deal with them.

  8. 2 months ago while grocery shopping, I felt all of the sudden like I was going to faint. My husband got me seated and immediately I started seizing. During the seizure I suffered a posterior dislocation and multiple fractures of my right shoulder. I have never had anything like this happen before. In the ambulance they said my blood sugar was 47 (very low). I had breakfast a couple of hours earlier. The search for the cause has been ongoing ever since.

    I’ve had CTs of brain, abdomen, echo, brain mri, eeg both short and ambulatory (48 hours), blood tests galore and nothing found but a pineal cyst in my brain that they feel has nothing to do with what happened to me.

    I had a tilt table test yesterday and have been searching to see if others had the same experience as I did. I had the chest leads and IV, but also had an arterial line put in my groin to constantly monitor blood pressure.

    They did put me up for a bit with no meds and I couldn’t see any stats so I have no idea if anything happened or not. Then they gave me something to make my body think it was exercising hard. This made me feel hot and racing heart and if I’d not been strapped to a table I would have wanted to sit down, but didn’t pass out.

    Then they gave me a nitro pill under my tongue and after a few more minutes gave me something else in the IV. Holy cow, after several minutes I felt so horrible. Pounding head and dizzy, sweating, lost control of bladder/bowels, threw up, cried. It was awful. Once I started throwing up they lowered the table. The Dr said my test was negative and is sending me back to Neuro for more follow up.

    I had to stay in the hospital flat on my back with no movement of my right leg for 4 hours and am limited to no exertion or lifting for the next 7 days due to the arterial line. The site is still quite sore today and the dressing can be removed this afternoon.

    Just wanted to share since I found this thread and maybe it will just make me feel a little better putting my thoughts in writing. Thanks to anyone reading this and I hope we can figure this out. Since this has happened my anxiety of it happening again is pretty much preventing me from feeling safe leaving my house.



    • I’m so sorry to hear you are having a hard time with this Bobbie! I was scared for a long time to do things, like walking outside alone, bc of passing out, etc. The anxiety we feel is partly real anxiety, but also bc when we stand, we get a huge rush of adrenalin coursing through our bodies, putting us into “fight or flight” syndrome. It’s our bodies way of trying to help us! The only thing with this is, it causes us to feel like we’re working our bodies a hundred times harder to do simple tasks, etc. and our bodies don’t know when to just calm down and relax! Did they not diagnose you right after the tilt table test? I was lucky to have the monitor facing me, so I could literally watch the numbers of my heart rate and blood pressure. Our blood pressure is known for going wonky and weird when standing, but to get a true diagnosis, they are only looking for a spike in the heart rate once going from laying to standing. I was also told right after that yes, I do have pots. I hope you find some answers soon, and keep me updated as to what the doctors say!!!

  9. All of this sounds about the same as mine except I didn’t get any IV’s stuck in me. they monitored me down, then up. when they put me back down they gave me a nitroglycerin tablet, then lifted me up. Withing 30 seconds I watched my heart rate go from 84-89 to as low as 29 then I was trying to pass out, but luckily they kept talking to me enough that I never went completely out. The heart specialist immediately diagnosed me with neurocardiogenic syncope…ever since 8/15/13, the passing out spells happen multiple times daily and after a period of time it seems as if now i’m having pooling of blood in my right thigh which is causing severe pain as well…my job took my insurance away in September bc of FMLA rules and crap, so I haven’t been able to see a neurologists like my cardiologists wanted me to bc I have no insurance. So it’s a struggle but, I couldn’t wish this on anyone!

    • A lot of people got the nitro tab but they said my body went too crazy without it, that it could have killed me. Though I pass out from pots, I didn’t faint on the table… almost felt like the bed behind me was holding me up so I could rest more than I would if I was just standing normally. I wouldn’t wish this on anyone either! I’m sorry you are having a hard time with working and insurance. It can and is for a lot of us, truly disabling and we don’t get the recognition for it that we need!

  10. I am 16 and I have POTS. I also have fibromyalgia as well. It is extremely hard juggling the two. Do you get severe migraines with your POTS? No doctor can figure it out because none of the medications work. I am on Flourinef but I don’t think it is helping. I also cannot take beta blockers. Any suggestions?
    Also, I am doing a research project for school on POTS between adults and teens with their heart rate numbers from when you go from laying to standing. If I can get ages and numbers from anyone that would be awesome!

    • I’m 31, but I got sick when I was 20. I would lay down with a heart rate of 90 bpm and stand w a heart rate usually around 135bpm. It would go higher if I was doing anything, up to 175, etc. bpm

      Why can you not take beta blockers? I had them make me very sick, but once I got a cardiologist who knew what they were doing, he had me fight the side effects, which were like having the flu for 3-4 months, and then I’d feel better… until I got on the right dose to keep my heart rate semi normal when I stood.

      I do not get migraines, but it’s very common for people with POTS to have them. I get bad head aches. There is a page on here that gives you tips for living with POTS.

  11. I am searching for help. I have been having seizures and passing out. I had a tilt table test, and for the first part, I did fine, but for the second part, when they put the medicine under my tongue, the last thing I remember was the nurse telling me that my heart rate had reached 100, and then I was being woken up when nurses around me. They told me I went into a seizure, and when they were trying to lie me down, my blood pressure plummeted, and my heart stopped for 22 seconds. The doctor never came back in, but the nurse said that he was diagnosing me with vasovagal syncope. Since that time, I have had several episodes of rapid heart beat and extremely high blood pressure, when my blood pressure is normally very good. I notice during the episodes which sometimes last for days, I cannot swallow, so I am not able to increase salt and liquids as recommended, and I sleep a great deal. I am going back to my regular cardiologist on the 6th (this was at a specialist), but I am so confused about what is happening with me. I have never had problems before, and I don’t even know if I should be worried or not, when I should go to the ER, or if I should, or what to ask my doctor when I go back. Please help.

    • your card. might be able to help you, but I got a referral to a Neurologist to do testing on the nerves in my body to make sure there wasn’t anything physically wrong w me outside of the nervous system itself. Cardiologists tend to just want to deal with the heart rate and blood pressure. I have never had a seizer, but have talked w many potsys who have, so it isn’t normal, yet not uncommon either.

  12. I am a 38 year old active female. My tilt table test was performed at 8 am. I fasted prior to the test. I was connected to an Iv, but not given any medication. I passed out during the first phase of the tilt table test and the test was stopped.

  13. I had about the same thing happen except when I hit the 30 min. Mark the nurse(really nice, actually had a conversation with her) told me I might just need to drink more fluids and not even 3 minutes later I “passed out”. I put the quotes there because I could’ve sworn I was still conscious but they said I was completely out. After they started laying me back down my stomach started to squeeze pretty hard and I threw up stomach acid I guess because there was no food in there. My doctor wasn’t really there for the whole thing but he pretty much walked in, looked at the charts, and all I kept hearing was pots(there was too much ringing in my ears). He walked out without prescribing anything but I met with him a few weeks later. The poor nurse almost had a heart attack…

    • What would we do without our nurses??? Perfect example! My doctor was all over the place during the test, but thankfully there was always someone with me, and he prescribed me right away after I got a chance to lay down for a bit.

  14. I am finding this blog quite helpful. After all i have read, believe my 16 year old to have POTS.
    We visit with her cardiologist tomorrow to discuss. She had a cardiac ablation about a year ago for SVT but still comments and complains about random forceful heartbeats and acceleration. Her heart rate will go from 40 to 120 when lying down, standing for a decent amount of time, etc. 5-6 times per week (that i know of). She had a heart monitor implanted about 6 weeks ago. This serves as evidence of the crazy heart rates, etc. The traditional methods of monitoring did not yield any findings. (Finally he sees them now.). She too feels faint in the shower, or when standing in line. Experiences dizziness and light-headedness several times per day when going from sitting to a standing position. Takes a moment or two to get her bearings. Too she went through a long period of time where she slept a lot during the day and had insomnia at night! (We’ve been working on keeping her moving/lifestyle changes so no napping will occur.) She too had mono 2 years ago. I feel that was the trigger. She was on a beta blocker (i think this made her worse). We took her off it a few weeks ago and she is sleeping so much better.
    She has bouts of nausea randomly when trying to go to sleep and has mild sleep apnea. She is fit and not overweight.. Her hands are often cold and feels full quickly after eating. Does this sound like POTS to you?
    All blood an urine tests came back in the normal range.
    No tilt table tests or CT scans have been performed.
    All of these symptoms present inconsistently and she has not fainted.

    • She sounds like a perfect potsy 🙂 A lot of potsy’s I’ve talked to, had mono, or really bad pneumonia right before their pots occurred. She definitely needs to get a Tilt Table Test done. That’s the main way of diagnosing it, and if you can, have her get a referral to a Neurologist, so they can check and make sure any of her blood pooling in her legs, etc isn’t due to any actual damage, bc that can have the same effect. Not fainting is very common too, but feeling like you are about to, or feeling like you might get sick, and then it tiring you right out. Best of luck for you both!

      • Hello again.
        So, we had the appointment in January after I exchanged this post with you. The Dr. did not suggest undergoing a tilt table test. It was suggested we continue with my daughter having a T&A first to address sleep issues with the hopes that restoring sleep would solve the multitude of symptoms. (ya right).
        She does see a neurologist for sleep issues, but not the latter (blood pooling).
        I did ask about the possibility of POTS and he at least acknowledged the possibility (to a degree). We go back in next week. Symptoms are still present. Some are lessened, other, new ones appeared.
        Not sure how to approach our visit. Any advice? We need to get “somewhere” with this. Even a diagnosis.
        I’m not sure how serious he assesses this to be. I feel a diagnosis would move us in A direction… whatever that is.. Frustrated!

      • If he isn’t willing to book a tilt table test, then get your family doctor (GP) to do it, or to refer you to a Cardiologist who will. The symptoms seem to be like that. Back and forth, a little better, then back to bad, then new symptoms, etc. I hope she’s hanging in there! Sleep is definitely important, but the underlying issue is still needing to be dealt with! Grrrr!

  15. I had the tilt table test on Tuesday, February 18 and passed out after the nitro. I woke up when the nurses were calling my name. They were talking between them and I thought they said I was out for 2 minutes. I heard them say I had no pulse or blood pressure for some time. I was so sick after that test and thought I was going to die. I had diarrhea, chills, nausea , and was dizzy. They did keep me for several hours and sent me home. I don’t remember even seeing the doctor until after I came to. He said I have vasovagal syncope (so does my brother and I’m pretty sure my daughter does as well). I still do not feel well- sick to my stomach and lightheaded. Has anyone else had a similar experience?

  16. Hello all! One month ago I started feeling dizzy, lightheaded and weak. After going to several doctors and having every test come out A+, I was finally put in a tilt table one week ago. After half hour I was doing good, and they gave me a pill to speed up my heart. After a few minutes my heart started beating fast and my blood pressure dropped to 0/20. I almost fainted. I am 32 and in my whole life I have only fainted twice after doing exercise on a stepping machine. Before the test I thought I was getting better being slightly lightheaded. After this test I have felt the worse. Nause every morning, dizzy and lighthheaded every minute of the day. My blood pressure is not bad I think, being in around 100/70 at the lowest 90/60 (before the pill i the test it was 90/60 80/60). The doctor dis diagnose me with neurocardiogenic pre syncope. What do you think? Thank you!

    • Definitely sounds like it. Though with POTS you don’t always faint. A lot of people just feel very weak and sick to their stomachs. I faint too, and as for your blood pressure. Even if it’s in what doctor consider “normal range” if it’s a big difference from what you’re used to, it can still make you feel crappy. I hope they can help how you’re feeling, instead of just leaving you sick with a diagnosis. Also maybe a referal to a Neurologist would help determine if there was any actual physical damage in your veins, etc.

  17. We were told that HMSA Hawaii does not cover tilt table test! Did anyone have a problem with their health insurer denying this testing?

  18. My cardiologist ordered and stayed for my tilt table test. I did not have any issues with my insurance company. The test was not a big deal, but I did fail the test. Medication was ordered (Midodrine), but it made me feel dizzy and have two episodes of extreme shortness of breath so I stopped taking it. I am staying hydrated and choose to not take any medicine at all.

  19. Vasovagal syncope problem, need to get to the bottom of this. Cause? Cardio? Can’t get pass the door to get the test! The Joker Cardiologist at Pali Momi said no hospital does the tilt table cause the insurance will not pay up. Get this, he even said the tilt tables are all gathering dust in the lowest basement of all the hospitals because no patient will pay out $1000.00 for the test! Shiss. Talk about climbing up a slippery glass mountain! I think I give up!

  20. Vasovagal syncope was my diagnosis too. I’m sorry you are battling that plus the medical world. Can you change cardiologists? I have to admit I was not initially in favor of all the tests!

  21. I had a tilt table test performed about 2 weeks ago. I was supposed to fast for 4 hours (I had 10 Oz of water at the four hr mark). They had me lay on the table and put two BP monitors on me (finger and arm) and 12 leads. Once they had the initial HR & BP readings, they tilted me upright for about 25 minutes (nothing happened). Then a cardiologist came in to massage my carotid arteries and I had to wait 10 or 20 mintues for a response (didn’t pass out). The nurse then had me take a nitroglycerin pill and within about 30 seconds I felt awful (like the worst drama queen episode ever) I felt like I couldn’t breathe and the room was spinning. As soon as my 5 minutes passed, the nurse started to lower the bed and I passed out. The nurse said my BP was 40/30 when I fainted. I haven’t had the follow up with my doctor yet.

  22. My neurologist just ordered testing for POTs. I am currently on low dose betablockers and I’m not sure if I should go off of them. Being on them my heartrate is usually around 55-60 resting and within 30seconds after standing it goes up to 100+. If I wasn’t taking the betas my hr would go through the rough. My nuerologist told me the tilt table test would include NORepinephrine tests while standing and supine. How long does your heartrate have to increase for while standing? I’m nervous about making myself worse and I am scared of feeling anxious. It helps to know there are others going through the same things.

    • Yeah, your Neuro wants to see what your adrenalin is like. It’s like the fight or flight part of your autonomic nervous system. I find while being on a beta blocker, it lowers my heart rate, but it still soars the second I’m moving around. The idea is to keep it within a normal heart beat range since it can’t actually stop the fast change in beats per minute. The amount of beats they’re looking for, differs with every doctor, but usually it’s 20-30 beats after laying down, and then going to a standing position. Don’t go off the beta blocker. My doctor had me go off mine a couple days before, just for the test, but unless they say to, I wouldn’t do it, bc it could make you feel even worse. When I got lifted up on the tilt table, my adrenalin soared and I got so anxious I cried a bit, which is actually very normal, but don’t be embarrassed, they’re more interested in your numbers than you any way.

      • Thank you! I don’t know why it took me so long to see this. My tilt table test went ok. Definitely a lot harder than I expected. But I “failed” the test in the first 30 seconds, and I fought passing out until about 6 minutes in. I got my POTS diagnosis without doing the second part of the test. And I did stay on my betas. I really was messed up after for a good week or so my POTS symptoms were much worse. I think the travelling and everything was just too much for me. Thank you so much for the advice 😉

      • Yeah all of it together was just so exhausting on you! I failed pretty much right away too. I wasn’t on a beta blocker that was working until after the test. I hope you’re getting some answers now and some tips for at home. Bath chair.. my number one advice. I have a list on here, bc I swear we learn more from each other than the dr.s with how to deal with pots.

    • It can be a scary thing. I’m 32 and have had 2 tilts in the last year. But you are in a safe place, with medical professionals. (Would not recommend the “poor man’s tilt”) They only give you nitroglycerin if you don’t pass out during the first portion of the test. It’s uncomfortable and unsettling. You tend to get kind of panicky, but just remember you are safe, and it will pass. Just try to remember to relax and just go with the flow, don’t try and fight it by tensing all your muscles, be still. The sooner you pass out, the sooner it’s over. (Not everyone passes out, but doctors still get the readings if you reach near syncope, almost passing out) speak with your doctor who prescribed the beta-blockers, ideally you don’t want to be on them for atleast a week before the test. But never go off medication with out first speaking with the doc first.

  23. Anyone have PROBLEMS AFTER TILT? Had my second tilt today. Passed out at 22 minutes cause my EP kept me talking as long as he could before I checked out. No meds given. Stroke volume (blood pumped out by heart) decreased by 50% immediately after I was tilted up. Both tilts have started the same, with that immediate sense of something wrong, now I know why. Been diagnosed with NCS and dysautonomia, as well as ehlers-danlos (joint hypermobility), avascular necrosis of both hips, adrenal insufficiency (when stimulated). Always had high pulse and low blood pressure. Question is, does anyone else have symptoms after a tilt or episode? After both tilts and near syncope or syncope episodes I’ve felt like crud, tired, slight vertigo, problems with depth perception, queasy, fuzzy in the head. Plus my heart tends to act up more after, baseline of 125bpm minimum when standing, with palpitations. This will go on for days after. Anyone else experience this?

    • I had my tilt years ago, so to be honest I was so sick, I don’t think I’d have noticed if I felt bad after being on the tilt table. I do know that after a bad day of symptoms and pushing myself to the point of passing out or nearly fainting… I am WRECKED. I feel like I’ve been wrung through the ringer!

  24. I have a tilt table scheduled in 6 days. I’ve had a general diagnosis of neurocardiogenic syncope for several years. I’m in my mid fifties. For about 5 years I’ve had episodes. At first milder ones and increasing each year. I work from home because I can’t go into the office and have enough energy to work. I’ve fallen in the shower, driveway, house, store and even into the card rack at the local drug store. That didn’t hurt as much as I thought it would. I don’t know that I’ve passed out. One moment I’m starting to fall and the next I’m down.
    I’m supposed to wear a nitro patch as I have CAD but I’m not wearing it this week so I get a true test result.
    My doctor is talking about the possibility of a pace maker being done right after the test. He even asked me which side was dominant so he could place it in a more convenient spot for me.
    I don’t like being exhausted, falling, and not being able to really go anywhere. I feel bad about wanting a positive result from the test because who wants to get bad news. But a positive result will hopefully get me on a path to feeling better. Wish me luck. And sorry for being long winded.

    • Yeah you definitely sound like a POTSy. That’s exactly what I was like, fainting all over the place before I got on a Beta Blocker. I’m surprised to hear about the pace maker… it’s not the norm, but I actually think it should be for long term potsys, who have symptoms for years with no show of it going away. There is a male, younger than me (32) who got a pace maker bc of POTS, and it makes perfect sense! Beta Blockers will bring our heart rates down to a normal level, but it doesn’t stop our heart rates from jumping up the second we stand. As well, beta blockers can lower our blood pressure, which isn’t smart to screw with when it’s hard for most to regulate it to begin with. Why are you on a nitro patch? If you don’t mind me being nosy. Wondering if this is another POTS thing, or if you’ve undergone other illnesses where it’s needed.

      I was the same way before my test. You want a result so they can finally start working on a way to fix it, or at least make it better… but it’s still hard to undergo a new diagnosis. It’s like a mini grieving process. I have multiple illnesses, and it never changes. POTS is NOT easy peasy to control, or to “get better” and live a healthy life with. I hate to say that, but it’s more learning to work with your symptoms, and slowly…. way too slowly, work yourself up and up until you can do more and more.

      I will be thinking of you, and please write back as soon as you are able, with how it goes!!! I’ll be rooting for ya!! *hugs* PS NO apologies needed. We all need to get our frustrations out! Just know, there are a LOT of us that truly get what it is you are having to deal with, and are here, ANY time you need!!!

      • I’m on nitro because have CAD, Coronary Artery Diseae. The blockage is only about 35% so while I’ve had a few heart catherizations they haven’t put a stent in. I also have heart spasms. They’re basically heart attacks at the ends of the small veins in your heart. I didn’t take them too seriously until I saw a me show where the woman died from them.
        Because of the mess I’m on (diabetic, hypothyroid, and migraines no less) I’m limited on what I can take for meds. I’ve tried beta blockers for the spasms but they just gave me more migraines.
        The Electrohysiologist is considering a pacemaker because I have shown SVT and VT’s on previous ekg’s and stress tests. He also said that while it wouldn’t stop my heart beat from rising, it would help slow down the speed of the drop when it decreases.
        It’s the first hope I’ve had in 5 years. I went to the store today. I spent about 15 minutes there and I felt like I was going to pass out while I was checking out. I’ve been exhausted all day and after 12 hours I’m just starting to feel better.
        I have the test this coming Friday. I could use all the positive thoughts I can get.

      • Ahhh makes total sense! It is so tiring doing simple things. I became SO deconditioned from POTS, but we also need the rest… so it’s hard to find that happy balance… especially when it changes from moment to moment.

  25. Good luck with your TTT! Hope you get the answers you are looking for! 🙂 I will be thinking about you next week! Best wishes

  26. I had my TTT yesterday and wouldn’t you know,nothing happened. It felt like I was leading up to an episode but nada! So, doc put in a loop recorder. I’m going to push it a bit these next few days. By golly I’m going to do all I can to make it record an episode.
    I see in other posts that some people have had the same thing happen during their test. So frustrating to know something is wrong but when it comes time to show it nothing happens.

    • Noooo! Isn’t that, the way it always works out!!?? I did the same thing with the loop lol. I did everything bad and tiring to myself and NOTHING. Same on my tilt test… I didn’t even pass out which was nothing for me to do then. Lets hope they find SOMETHING!!!!

    • the tilt table test was a dud but worked when a stimulant was pushed into the iv to raise the heartbeat, BONG out! Full on episode!

    • Well you don’t have to faint to have pots. The moment they tilted me upright, my heart rate shot about 70 beats higher, and I believe you only need to shoot around 30 in the first 5 minutes to get a diagnosis. Plus my adrenalin was through the roof, so couldn’t risk giving me more to get me to faint.

  27. hay, im 22 and have been dealing with this for months now. i feel dizzy every day and tho i dont always faint, wen i do my vision get blurry and sounds are defining, and i get killer headaches on a daily basis. wen i stand up my heart rate jumps from 70bpm to over 100, my bp has always been on the low end, but it has droped near to 0 previously, tho that time i was severly dehydrated and such… camping trip went extremely wrong… anyway i had my TTT done yesterday, and it was trechourious. they couldn’t find a vein so iv went in my hand. the first part of the test my heart rate went from 98. with 120/75 bp laying down(a bit high for me75bpm with 110/50 is my norm, but i was freaking out as drs and hospitals cause me to panic) to 137 at its highest with a bp of 105/70, at which point i was trying to concentrate on my breathing so i wasn’t freaking out anymore. then the.second part of the test with the nitroglycerin spray under my toung was horrible , my heart rate sped up past the 150 mark and my bp jumpeivebk up to the 120/75 an then plumeted down below 100/45, i was lightheaded and my vision went blury, i felt like i ran a marathon, not to mention i get verry sensitive to sound wen i feel faint. though i did not faint during the test i felt like i was dang close to, and i fainted after it. the nurse practitioner said it was negative and all seems normal, how the heck it that normal. its not normal to me constantly dizzy, its not normal to faint wen just moving a light sound bar at work that only weighs 10lbs. even fainting at my church isnt normal, im in the music ministry and i hav nearly fell off the platform from fainting, according to my youth leader everyone thought the holy spirit struck me, untill he realized i had fainted, i was hanging half off the platform and apprently i was out for 4 minutes. apprently he carried me back stage an had a fello minister who is a nurse check my bp an pulse, told.me pulse was over 200 and my bp was 40/20, its scary cuz i dont even remember what i was doing b4 fainting… i can barly even sing anymore. any tips please, i cant take it

    • Ugh sorry to hear you had such a hard time. A lot of potsys I know sang at church, and found it hard to continue to do so bc of having to stand! Because it affects our Autonomic Nervous System, it can definitely affect our breathing, which like you, would affect your ability to sing, let alone stand and sing. There is a page on here about tips. My biggest advice is to conserve energy, so you can use it more effectively for the things you love, like singing in church. Get a shower chair, get a stool for in the kitchen for cooking, prepping, and doing dishes. Drink WAY more water than you think necessary, and remember, for every caffeinated beverage you have, that takes away one glass of water from your system. Eat every couple of hours, even just small portioned snacks… as healthy as possible, whether you are hungry or not, bc it will keep your body from crashing faster and harder. When sitting or laying down during the day, stretch your legs to keep them built up. Being so fatigued and potsy will make your body deconditioned FAST and it takes so much longer than most illnesses to build yourself back up. I truly believe in resting constantly, and taking care not to over do it, but don’t give up and let the weakness get you altogether either, or else you’ll be in big trouble. Bring snacks and water with you EVERY time you go out, so you can give yourself the boost you WILL need. Also, if you start to feel faint, but are stuck standing, run your wrists under cold water to help raise your blood pressure. Or at the very least, get a cold cloth and wrap it around your wrists. Keeping yourself cool is key. Hope any of this helps!

      • Hay, thanks for the tips ❤ I saw my cardiologist yesterday and he doesn't know what to make of my symptoms, he suspects nmh and adknoledged pots is a likely possibility, but wants to find whats causing me to be hypovolimic(don't no if I spelled it rite) dispute how much I drink (anywere from 3-5 letters of water a day) b4 anything else. Thanks again

  28. i had my tilt test today, and I was so scared and worried. I didn’t want to pass out and ect. But once I got on the table and strapped down and hooked up. They got some vitals and stuff, then it felt like immediately tilted me up. As soon as my table got up, I heard my cardiologist say, “I got my diagnosis.” There was a bunch of interns or med students learning and stuff and observing. After a few seconds they asked me how I was feeling. I said like crap. Kind of dizzy. Dr asked if I could stand a little longer. I said, “well how long is a little longer?” He said “few hours.” (Jokingly) I said nope! He asked if I could hang in there for a few minutes and let him know if it got worse. I said okay. After about 5 more seconds I said I felt like I may throw up, my legs were getting a little weak, and I starting feeling a little worse. He told them to immediately lower the table. After lowered I felt a little better. But still kind of shakey. I was only tilted up for 30 seconds. That was the shortest tilt test they have ever done there. My cardiologist said that my heart rate immediately rose 70 beats. I would say 70 bmp, but I wasn’t tilted a full min. So it rose 70 beats within 30 seconds. I did not pass out. My cardiologist said he would try really hard to not let me pass out, that that was not his intention. He said some doctors like to push you to see how long you can last. He said he would push a little bit, but not to make me pass out, and as soon as I said my legs were going weak and I felt a tad bit dizzied, he lowered me down. But like he said, he had his diagnoses as soon as the tilt began. Really he had it before the table even got all the way up. So needless to say, I have POTs. Once I was down on the table he said, “yea, you definitely have POTs. Bad. Your heart rate only needed to raise 30-40 bmp for my diagnoses, yours rose to 70 in less than a min.” Then he showed me the charts from my test. My heart rate was at the top of the chart right from the tilt. It was at least 160 if not higher. I didn’t have to have the medicine to induce symptoms. It wasn’t as bad as I thought, but with a different doctor, it could’ve been. My symptoms that sent me there were dizziness, chronic fatigue, head aches, higher heart rate, palpitations, chest pain, shortness of breath. I’ve never actually fainted from pots, but I have almost every symptom listed. And when I say chronic Fatigue, I mean chronic. I get weak and tired extremely easily. And my legs always hurt. So that was my ttt experience. I don’t want to do it again, but it wasn’t too bad. Reading this site really helped me out before my tilt test. I was extremely nervous and reading some of these experiences put my mind at ease more. So thought I would share my own.

    • Thank you for posting this! It really does show that TTTs can be done differently, and patients treated differently, AND our reactions to the test can be different. I was up for about 30-45 min.s but I didn’t pass out either. Which is another nice thing to show. Even if we may be the type to pass out, or not, you don’t always faint during a tilt table test.

  29. I just found this site today. I don’t know if I have POTS but I suspect it. I have an appointment with a cardiologist tomorrow because my PCP said I am definitely Orthostatic. I first noticed symptoms about 3 weeks ago. The shortness of breath and dizziness started two weeks after feeling great after a battle with Mono. I went to a walk in ER during work and they did the poor man’s TTT. My PCP also did the poor man’s version. My heart rate started going about 20 bpm more but now it’s 30-35 more after standing. I put on makeup the other day and it rose 60ish. I’m worried I will get worse. I have a 5 and 3 year old so rest is not easy to come by. I go through every day feeling short of breath, nauseous, tension headache, terrible fatigue, brain fog…omg the brain fog. Im a paralegal and lately I feel so dumb! Im hoping my labwork comes back saying I am still fighting Mono and when that goes this goes too!

    • Some ppl it goes away with over time especially if you are younger when you get it. What did the cardiologist have to say? Working with pots is SO hard! I give props to all the good moms out there, but the ones who are good while being chronically ill… now they’re warriors! A lot of people show pots when they get mono. Sometimes it will leave over time, sometimes not, but it is a common illness that brings pots out in people.

  30. I have always gotten very lightheaded when I stand up and I have to immediately lean on something bow my head and close my eyes until it passes. Well, within the last week and a half out of the blue I get a hot feeling then extremely lightheaded. I always make it to the ground in time so I don’t pass out. It happens when I’m driving, standing in an elevator, walking somewhere and just today I had done some cardio for 25 minutes. I walked into my kitchen to grab some Gatorade and I got so lightheaded with tunnel vision I barely made it to the floor. Then my heart rate was sky high, I started going poop non stop and for an hour or so my heart rate was elevated. It would come in waves. My blood pressure is normally low especially when lying down. My doctor said as soon as I sit up my heart rate jumps and I have vasovagal presyncope. It hit once while driving home from the beach. I pulled off of the road and once the lightheadedness and hotness went away I was shaking uncontrollably for about an hour or so. I have a tilt table test tomorrow. The nurse said that I won’t get the meds. After reading people’s exepriences I am nervous and don’t want the test done 😦 when lying down my heart rate was 66 as soon as I sat up it jumped to over 100. This happened last week in the Drs office. She just suggested more electrolytes

    • The test is actually never as bad as people expect them to be usually. It’s very rare people have a bad experience. I would keep working with different cardiologists, until you find one willing to actually do something to help you.

      • My Primary care Dr suggested the Gatorade. My sons cardiologist suggested that I had vasovagal after making me lie down and then sit up. I found a cardiologist on my own who suggested I get the table tilt tomorrow. Do my symptoms sound like it to you? It’s worse in heat. I can not handle heat or cold very well. The lightheadedness always happens right after the initial hot feeling. Tunnel vision, sometimes pounding heart rate then panic starts to set in. I’ve always been told it’s just anxiety

      • That stuff helps, but you sound like a potsy. POTS is if your heart rate goes up I believe over 30 beats per minute within a few minutes of standing, and you have a lot of the other symptoms too. Check out the tips portion on this blog, bc it will help you HUGE with what you can do around home to make things easier for you! PS anxiety is a give in. Pots affects our fight or flight syndrome… so we are constantly on edge. People constantly get misdiagnosed with anxiety when trying to get diagnosed with pots.

  31. Thank you so much for your input. I will post my results tomorrow. I do have anxiety but I’m so tired of always being told that it’s all panic attacks or anxiety and being prescribed prozac and Xanax. I’m hoping I will get an answer tomorrow besides anxiety

    • I know what it’s like. I have depression, but we are also chronically ill, so there would be something wrong with us if it didn’t bother us sometimes! And we know our bodies, and when it’s being stressed box we’re sick or bc of actual mental illness

  32. Well today was the big day for the tilt test. We ended up not doing it because my anxiety was through the roof, however he took my BP while sitting and it was fine and when I told me to stand up it plummeted to 80/50 and then I got lightheaded. He diagnosed me with vasovagal and pots. He prescribed me a beta blocker and another pill to help me retain water. He said I will have to eventually get the tilt table just to confirm but he is confident this is what I have. I also have to take salt tables every 6 hours. Have you any experience with beta blockers? Part of my anxiety is towards meds so I never take them.

    • Better to take your med.s It took my beta blocker 2 years of changing the dosage to get it right. So in order for them to do it properly, you have to be able to give it a good try. Literally the beta blocker would give me POTS like symptoms way worse than I already had, for the first four months after my dosage was changed. It takes a long time for some people. All the other ones didn’t work for me sadly. And remember… POTS effects our fight or flight part of our nervous systems, so letting yourself be sick without med.s, is not going to help that part of the anxiety. It’s more stressful on the body to make it fight so hard all the time, then it is to take the medicine and give it even the tiniest bit of a rest!

  33. I’m new to the board and I just wanted to share my experience with everyone. I had a tilt table test done on July 23. I had to lay down and get leads on for my heart monitor, a blood pressure cuff and an IV. That was rough because I have tiny veins that roll and I was dehydrated because its a fasting test. After they got the vein they rose me up and as soon as I was up I wanted down. I could feel my heart start to race and my head get light. I also get a very full feeling on my head and ears. I was woozy and warm. After 12 min I started to get emotional. I cried a bit and was a little embarassed by that. I just really wanted to sit. My BP and HR just never knew what to do. They were up and down and never regular. My HR never fell below 110. After 20 minutes they administered a spray of nitro glycerine and a minute later my heart rate went up and up all the way to 150. Hy BP eventually fell to 58…not sure the other number. Weird part was I never passed out. The tech said I was fighting it hard. So she lowered me and I was done. We wated for my fluids to finish and she unhooked me and that was it. The next day I got my positive result (obviously) and I have been started on 0.1 mg of Flodrocortisone every day. All in all it was a reppty nasty test of you are symptomatic. However it did get me my diagnosis so I’m glad about that. In 6 weeks we will see how I am on the Fludrocortisone.

    • Thank you for sharing! You cried like I did, because your adrenaline was pumping and it can cause us to get emotional. I heard a lot of good things for people who took Flodrocortisone. Let me know how you are doing!!!! I never fainted either… which is weird, but I feel like even though I felt horrible, I was still leaning a bit on the bed tilted up, so I think that helped. It wasn’t like I was just standing with nothing holding me up.

  34. I’m fifteen and have just been dealing with POTS since December last year. I ended up going to the hospital multiple times with heart rates around 200 bpm when moving and irregular 120 lying down. Of course my heart started behaving like an angel as soon as there were doctors around so I was told alternately that I was making it up for attention or that it was all in my head. I was lucky and got a cardiologist who knows about POTS by March.
    I wore an Echo monitor for two weeks and had bloodwork and ECGs, All normal except for a few high heart rates I kept having dizzy spells, almost fainting, being sensitive to heat, feeling like I can’t breathe (O2 at 100% no matter how bad it felt), having my temperature rise or fall dramatically, nausea, fatigue. I used to play lead in jazz and concert bands in my city, but the pressure on my lungs confuses my body so I can’t any more.
    Eventually the cardiologist ran some tests in her office, just blood pressure and heart rate lying down and standing. She was pretty sure before doing the test that it’s POTS because my symptoms would usually go away or abate somewhat if I rubbed my feet to increase circulation. She prescribed me Fludrocortisone and it, along with salt, water, compression stockings, have helped a lot. I finally got the call from a place that does tilt table tests (on of something like three in Canada that do it for people my age). I’m getting it next week. We have to pay for it upfront because it’s in Quebec and my healthcare is for Ontario, but hopefully we’ll get most of it reimbursed.
    The setup is a bit different than yours. There’s no IV, I’m supposed to eat a light lunch beforehand and keep taking Florinef. I really hope it tests positive because even though I’m pretty sure it’s POTS, someone more familiar with it might be able to use the data to figure out the best way to make me feel better.
    After all of the horror stories online and just generally psyching myself out, this post was reassuring. Thank you so much for that! 🙂

    • LOL I was terrified too, but weirdly, it’s not (at least not for me) as bad as I thought it would be! I have the same problem, where it seems my symptoms want to be better when I am around my specialist… very annoying bc that is not what I am like on a normal basis at home. A lot of people have problems with other organs in the body… like the lungs. It makes our bodies react differently bc pots effects the autonomic nervous system (everything our bodies do automatically) I actually was diagnosed with asthma… and a week later was told I didn’t have it at all. My inhaler wouldn’t even work bc it was just the nerves in my body reacting like I was having an attack… when in reality my lungs are fine. They do say, potsy’s should try not to do things like blow up balloons, etc.

      Where abouts in Ontario are you??? I got my tilt table test done in Kingston (I’m in Ontario too) I wonder why they are making you pay to go out of province when there’s a tilt table here… I’m even getting another one done soon, so I know there’s one here that would be covered for you. It would be at KGH. Kingston General Hospital. I would ask your doctor about that.

      • I’m in Ottawa, but I’m glad I got it done in Montreal as the doctor was very knowledgeable and helpful. Also I’ll be almost fully reimbursed by OHIP. I don’t think my doctor knows about the Kingston one. That, or they won’t do tilt table tests on fifteen-year-olds.
        The test went pretty well. I felt sick and all when the table tilted, but they only did it for ten minutes or so and my heart rate returned to almost normal the moment I was horizontal again. My heart would also spike up to 160ish then drop down to 80 before jumping back up again while I was standing. Weird… So my heart acts like a healthy heart and seems healthy except it goes faster than normal. My nerves also seem to be normal and my head seemed to get enough oxygenated blood.
        The doctor said that my POTS is relatively mild. The problem is I’ve had asthma all my life and the two conditions make each other worse. For instance, people with asthma get stuck in a loop when they’re having an attack (panicking makes it harder to breathe and it being harder to breathe makes you panic) and that caries over a bit to the tachycardia I’ve had. It also means that I can’t take beta blockers because then I wouldn’t be able to breathe. When I can’t breathe well due to POTS, it worsens my asthma and vice versa.
        Some good news is that he’s trying to get me off Florinef in the next few months by getting me to go to cognitive behavioural therapy a few times instead. He said it should help me stop myself from getting into a loop caught when POTS and asthma start acting up.
        Some of the attacks I described didn’t sound like POTS though. I had ones in the first few months where my heart rate would jump for no reason even lying down and others I’ve had for a few years where my heart spontaneously starts fluttering at around 180 for a minute then suddenly returns to normal. I think those were probably due to a two-month long lung infection, asthma, deconditioning (form the lung infection and a sprained wrist) and a bad reaction to a penicillin based antibiotic. Thankfully I haven’t had any of those attacks since May.
        Exercising (particularly yoga and swimming) have helped a lot and I feel like I have more energy now. The weather’s starting to cool down here (no longer in the 40s with humidex) which also helps.

  35. I had a tilt table test a few days ago. When I was laying down before they stood me up I started to feel a little sick (for some reason laying flat on my back seems to make me feel that way). I was okay though. Then they stood me up and it was the worst feeling ever… I immediately felt like I was going to throw up and I felt like I was going to pass out. I started crying and saying (begging) “please lay me down, please unstrap me” over and over. They put me back down and I was able to roll over and immediately felt better. They said my heart rate went from 100-ish to 170 within a few seconds but I haven’t met with them regarding what they think yet.
    I was so upset with myself because I felt like this was going to be the answer I have been waiting for but then I wasn’t tough enough to get through the whole test (or even a few minutes) so now I basically ruined my chance for them to get a good picture of what’s going on.
    What I’m wondering is- Do I absolutely have to make it through the entire tilt table test for them to determine if I have pots or not? I don’t think I could get through a whole test. When my heart rate goes up really quickly like that, I always start crying a lot and feeling really overwhelmed (so embarrassing). The same thing happened during my stress test. Cried like a baby when I was about 4-5 minutes in and my heart rate went to 192. Talk about embarrassing….

    • I cried! We are having a huge burst of adrenalin… our fight or flight system in the body, so when we can’t do either, crying is VERY common they told me. Don’t ever be embarrassed by that! It is obvious that it would be better for you getting help if you were to make it through the test, but technically they only need you up about 3-5 minutes to prove your heart rate shoots within a short amount of time, and boom that’s pots. Leaving you up, helps them determine how you react at your worse, and your adrenalin levels. Obviously yours is high! Maybe ask them for a poor man’s tilt table test. Basically, it’s just doing it in their office by sitting in the chair, then standing with them watching to make sure you don’t drop. See what they say, bc a lot of potsy’s have been diagnosed that way 🙂

  36. I have recently been diagnosed with neuropathy with burning and freezing hands, feet and dizzy spells as well. I am 52 and had my tilt table test two days ago which proved positive for Vasovagal Syncope which required a four hour fast before testing. The nurses and cardiologist made me very comfortable, they dimmed the lights and kept the room quiet. Next was the iv and placing the electrodes and being strapped to the upright bed for my safety. The bed was lowered flat and stayed that way for sometime, Things changed pretty fast once they raised the bed straight up, within 15 minutes I passed out. The cardiologist told me that I had no bp or pulse when I was out, I don’t know for how long and will ask my cardiologist at my next visit. I feel fortunate that it was all recorded and that it happened in the hospital. I was tired and a bit worn out, but was well worth it all.

  37. I had a ttt yesterday. It was interesting. Went into out patient hospital fasted after midnight. They hooked me to IV but Dr said he never uses drugs since its not needed. They wheeled me back usually when I did pass out I was lightheaded with short of breath and palpitations. Not this time. Dr said he would try not to make me pass out but come pretty close. So they hooks me to EKG and blood pressure cuff and the external pacemaker where it monitors Bp and hr by beat to beat. I was raised up to 70 degrees it felt rather gas I almost passed out just from that. Then I waited I think 11 minutes in I got so nauseated that I thought I would vomit table lowered Dr said hr jumped but Bp bottomed out to 60/23 its usually 112/65 or around that. So he started me midodrine 5mg 3x a day. Which depending on how I react to it I don’t think ill take it that much maybe twice for work since I work overnight in a casino. Does this sound like pots? Dr called it neurally mediated syncope

    • Well a lot of people with pots are affected with their blood pressure, but technically the specialists are looking for a jump in heart rate… but the fact they put you on Midodrine tells me that yes, you definitely have pots probably. You should take it as your doctor prescribed, but be careful about laying down after you take it, for at least an hour afterwards, bc it will make you blood pressure drop drastically low if you do. I’d also up your water and salt intake to help.

  38. I am going through a lot of this with my 16 year old son going today to st Francis hospital to see another cardiologist he feels faint but does not pass out has a rapid heart beat left arm gets numb sometimes and has complaints of his chest hurting a lot lately I was diagnosed with cardio syncope many years ago as was my niece who has a pacemaker and my sister also. Another niece was put on meds like I was I am going to request the tilt table test due to the fact that this was the only test that ever showed anything at all with results

    • A Tilt Table Test is exactly what you want to get done. It will rule out so many different things, and get your son a proper diagnosis. Not fainting is actually pretty common too. When you do faint, it’s your bodies way of helping you, by causing you to be flat, and allow proper blood flow back through the body, but when you don’t faint you almost feel more terrible bc you’re suffering so badly. If the specialists done help, keep fighting until they do something. I get terrible chest pains… this won’t always work, but my nurse said, to lay on the right side of the body, taking the pressure off the heart. It helps even if just a little. Please keep me up to date on how he’s doing 🙂

  39. Hi, I just happened across your ?blog?. I thought I would share my experiences. In 1993, I was lucky enough to find out about the Tilt Table Test- I have had symptoms most of my life (as in would get hot & clammy & sick as a 5 year old standing still for my mom to do my hair-not pleasant). I have never been able to run (never- and I don’t believe it is deconditioning- because In the past I have walked alot just fine). I was diagnosed with Chronic Epstein Barr, Chronic Fatigue Syndrome, Chronic pain sydromes, depression, etc. (I’m bipolar, so I would roll my eyes because thrre were times when I was mildly manic & they were saying depression (trust me- I know depression, I know presyncopy, I know exhaustion- they aren’t interchangeable).
    My test was at Jihn’s Hopkins, was told not to eat from midnight on, the night before. I too was taken into a large room with lots of machines, interns, etc. –“seatbelted”, had an IV started and laid still for about 45 minutes then I was slowly tilted to a 70degree and asked to remain quiet & still, but to tell the technician when I felt my symptoms. Almost immediately I began to feel naseaus, really hot, my head started pounding, I started to experience pains in my hands and legs, it was an incredibly long 26 minutes…but at the 26 min point I went from 118 beats per minute to 62 an my blood pressure went from 114/81 to -/52.

  40. Hi, I had a ttt today and the standing position was normal I was told, but when I was administered the nitro I began to feel very sick within a few minutes, sweaty, dizzy, nauseated and then I passed out. I woke up to the nurses laying me down. I heard the PA asking the nurse about heart rate and I think they said 50 or 59 when I passed out. I’m trying to find out…why would I not pass out on the first part, but did with the second part? It was a terrible terrible feeling. Why do some people pass out and others don’t for the second part. Is that abnormal? I was reading about nitro and it said that you should sit when taken to reduce dizziness and possibly passing out. Why do they induce a pass out? I think my pulse stated between 80 and upper 90s during the testing. Waiting on a calle back.

  41. I have my TTT in the morning I’m extremely nervous I don’t pass out but my heart rate has been 106 or higher lately I’ve been experiencing all symptoms except syncope do you think it’s POTs my doctors suspect it is so do I but I’m afraid I the results won’t show it if it doesn’t then what am I supposed to do

    • I didn’t pass out on my tilt test. A lot of people don’t at all. They will boost you with medicine if your body isn’t responding badly enough in their eyes, so don’t worry. It WILL show. I didn’t feel nearly as bad on the tilt table, as I did normally standing, and my results showed through the roof. Best of luck hun, and let us know how you do.

  42. I’m a 16 almost 17 year old female I had my first episode last September because of the way I fainted I had a seizure and was taken to hospital ever since then I’ve been having dizzy spells but don’t faint, but I’ve fainted over 110 times since then and it happens with out any warnings so I can’t tell any one I’ve had EEG, ECG blood works ect but everything came back normal and now I’m not sure what to do and what it could be my heart does go up more then 30bpm when I stand up from sitting down my dr said that I’d grow out of it but I’m not to sure now

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