Tilt Table Advice?

[BJD]

Hello:

I have my first TTT coming up and have a few questions. Thanks in advance for any help.

1) I have been loading with salt/water lately and feeling much better. Should I decondtion myself so that I get an accurate reading on the test or will this not matter?*

2) What can I expect from the test? Is it really awful?

* I have done the laying/sittiing/standing BP test twice. Once when I was feeling great and once when I had minor symptoms. The time I felt good my BP did not drop. When I had symptoms it did drop. I want to make sure the TTT shows any abnormalities so I can move forward with treatment.

Thanks again!

[misstraci]

Hi welcome.

1. I'm glad the water/salt has been helping a bit. I would back off or at least explain it to them to make sure things stay accurate and baseline to what your body would normally do.

2. The test is super simple but for those with bad symtoms, it can be bad, it all depends on the person I suppose. For myself, after a portion of the test, they gave me nitroglycerine to "provoke" more symptoms and not trying to scare you (in case you're also given it) but just be prepared, no one prepared me. The first 10 seconds were fine and all of sudden I felt immense, crazy fast heartbeat, lightheadedness like never before, i thought i was going to puke, things were blacking out and then they laid the table down. My BP went to 40/20, HR 170s. Sometimes you aren't given any drugs, for me they did because my normal test was borderline and I think they wanted to provoke my symptoms and compare with how I usually feel.

Good luck, let us know how it goes!!!

[margiebee]

1. I was concerned about this too, but honestly I continued on with salt loading and hydration up until the day before my test and I still had a very "POTS positive" test. Although my condition doesn't fluctuate super dramatically so maybe for you this wouldn't be the same.

2. My test went pretty smoothly as far as symptoms. Sure, it is uncomfortable, but no more uncomfortable than what I experience in my everyday life. I know for others this is different. I also was not given any drugs during it because my doctor doesn't think that's needed. But really, I was SO SO SO nervous during my test that it wouldn't show anything and I'd be back to square one, but don't worry! If you have a good doctor my bet is they won't just "drop" you because of one negative TTT

[lejones1]

1. I wouldn't try to decondition yourself because while it may exacerbate your symptoms, it won't really be an accurate depiction of your condition. You want to know what's going on with your heart and nervous system, not how you respond to dehydration. I had no idea what POTS was when I had my TTT, so I wasn't particularly hydrated and had been told not to drink anything for 12 hours before the test. My BP dropped about 20/10 when I stood, then recovered, but it confused my doctor and he wouldn't diagnose me with POTS. I got a 2nd opinion and we realized that my BP only drops when I stand if I'm dehydrated and it's pretty much a non-issue. Anyway my point is...just be careful with trying to affect your results. Do what you do normally and a good doctor will correctly interpret the results.

2. It probably won't be too bad, it was mostly just boring for me until the last few minutes. Ask for a bag of saline afterwards, it'll make you feel much better for the trip home. My only caution would be to ask how long they'll keep you up and at what point they'll bring you down if you're having a reaction. Towards the end of the test my BP crashed and spent the last 7 minutes fluctuating between 60/40 and 50/30. My vision blacked out, I was shaking, I begged them to stop the test and I finally just slumped over for the last few minutes. It was MISERABLE and cruel and honestly felt like torture. The nurses told me afterward that their policy was to only end a test if the person faints or their heart stops, no matter how uncomfortable they seem to be. As I mentioned above, I switched cardiologists and the 2nd one couldn't believe I'd been kept up that long with that BP. So...just check before hand so you know what you're dealing with!

[Racer]

I wasn't allowed to eat or drink anything the night/morning before the test. If you faint, it will probably be a bit different from your normal fainting experience. Usually when I faint, I am out really quick, usually before I can reach a chair again. The TTT was a bit worse for me. I felt like being strapped to the table prevented a quick faint, and instead it seemed to all happen in slooooow motion. I was given IV saline after, and felt a bit messed up for a couple days, but the whole thing was well worth it, since it got me a diagnoses and some much needed medication!

[BJD]

Thanks for the info everyone! I have my test on Monday and I'll let you know how it goes!

[dpeeps]

My experience was like MargieBee. I had symptoms, but nothing worse than what I experience every day. I did not pass out, though. And I hear that is what makes can make it "bad" for some people. They did not have to use any additional drugs to illicit a POTS response. THe doc had what he needed within less than a minute after Tilt with my HR increasing 50 BPM upon upright tilt. I felt yucky, but again nothing worse than I experience during a flare.

[Edin]

For me the TTT was a very tough battle of will power. It was pretty short I remember, I was in the upright position for only 10 min. From what I remember I had some sort of IV in my arm throughout the test and I took a breathing test in each position. I'm not a fainter, but I was barely holding onto my consciousness while I was in the upright position and my legs felt like they would buckle under me any second, but I pulled through. My mom told me afterwords that my laying down bpm was 90 and my upright was over 300. I'm not sure if it was what they gave me, my body just not liking the test, or both. I was really worn out after the test and had to be taken out of the hospital in a wheelchair.

Whether the test is hard or not for you, I hope you get the results you are wanting. I wish you the best of luck.

[misstraci]

Curious to see how your TTT experience was and if you found out anything?

[Hope]

BJD,

When I did the tilt table test I was at my worst that I've been. It was during an ER visit. A very kind and understanding doctor ordered it for me and had me stay the night. I didn't need the meds to enhance my symptoms. The gals giving me the test were discussing POTS before I was off the table. At that time I had never heard of POTS. Nobody seemed to know what was wrong with me until that moment. I remember the very kind woman looking down at me and saying "you've got a diagnosis now, they are going to be able to help you start feeling better". She told me her mother-in-law had it also so I guess she was familiar with it. God bless her and the ER doc who ordered the test. I will check back to see if you post your results.

[bebe127]

Everyone is different and reacts differently. I had my TTT shortly after an ER visit and short hospital stay by the EP that treated me at the hospital. Two months after my first episode, I had the TTT. No one explained to me what was going to happen or how the test was done. I can't remember whether I ate or drank before the test and I wasn't on any medication at the time nor was I water/salt loading. I had only fainted once in my life and that was about 20 years ago when I was a teenager.

During my test, the dr. left the room saying, "most people don't react for about 20 minutes." Well, after three minutes my hr went up by 70bpm. I could feel it coming on and told the nurse that it was coming on and I started to cry. The dr. came rushing back in, I think at this point they lowered me immediately. He said that since he wasn't present, he'd have to repeat the test. They raised me again, and again, my hr went up, but this time a bit higher. They also noticed that my bp went up. During the second tilt, the dr. tried compressing my neck artery, that didn't help, he told me to cough, that didn't help, and then he told me to bear down, that didn't help (all while I was freaking out a bit and crying). All these things are supposed to bring your hr down. The third time, he injected me with adenosine. He explained that if I had an arrhythmia, this should stop it. It didn't stop it, it made it worse and I felt like I couldn't breathe. I was crying and they immediately put me down. I never fainted. In fact each of the three times they put me up, I had a reaction within three minutes and was put back down within five minutes. I never had any medication to elicit a response (that just seems torturous to me personally). The dr. came back with "you probably have POTS" and that's where he left it.

Try not to worry. For me, it wasn't nearly as bad as I thought it would be and like others on here felt like a normal episode. I was just glad that they didn't pin my arms down.

Good luck and keep us posted on the outcome.

[BJD]

Hi Everyone:

Sorry it's been so long. Thanks for all of your encouraging posts. There were several delays in taking the TTT. But it came back normal so not sure where that leaves me. Loading with salt and water does seem to help me, so right now some form of Dysautonomia is my only real lead on this crazy condition I have.

I bought a BP monitor and have been doing some half-*ssed measurements with it. Most of the time it's been just under the 180/20 range. But today I took the following readings, all withing the same twenty minutes. I would really appreciate any advice or opinions on this. I'll keep in mind that most of us aren't doctors. Thanks!

Sitting 100/70

Standing 137/84

Sitting 109/76

Standing 119/67

Laying 114/72

Sitting 112/81

Standing 102/68

[JuneFlower]

can't give medical advice but those are all normal results. The 137/84 is borderline high but a one time reading is not a worry usually.

[Racer]

Hi Everyone:

Sorry it's been so long. Thanks for all of your encouraging posts. There were several delays in taking the TTT. But it came back normal so not sure where that leaves me. Loading with salt and water does seem to help me, so right now some form of Dysautonomia is my only real lead on this crazy condition I have.

Have you seen a neurologist AND a electrophysiologist? Neurologist and cardio tend to do slightly different TTT and can interpret the results in much different ways. You could have one that is normal, and the other abnormal, etc. The much more comprehensive autonomic workup by a neurologist usually includes neuro TTT, qsart, breathing tests, standing catecholamine battery, 24hr urine, etc. The electrophysiologist tends to rule out heart rhythm causes with standard tests like ekg, holter monitor, cardio TTT, etc, and functional problems with a echocardiogram, chest x-ray, etc.

I would like to believe that most with a definitive diagnoses have had all or most of those tests done. My neurologist wouldn't treat me until I had the full cardio testing.

[BJD]

Thanks for the responses.

I have not seen an electrophysiologist. In fact, I've never even heard of that specialty. So thanks for the tip.

I'll look into this a bit more. I've had so many tests done and have been searching for a diagnosis for this thing for over 15 years. If anyone has any ideas as to what else I should look into I would be most grateful. I wouldn't consider this medical advice, just areas to investigate. I've been searching for an answer for too long to panic over possible hypothetical causes, so please don't worry about causing me any anxiety with your suggestions.

My symptoms are brain fog and mental fatigue, especially after exercise. But I usually do fine while I'm exercising. Overall, I seem to do better on a high carb diet, and a low carb diet leaves me feeling run down. I've looked into hypoglycemia, mitochondrial disease, and all of the other standard stuff and all of my tests have come back normal. Thanks again for any and all suggestions.