What To Expect During Ttt

[TypewriterGirl]

I was diagnosed with POTS in October but I'm having my tilt table test on Wednesday. Needless to say that after watching the YouTube videos, I'm terrified. Anything I should prepare myself for (or brace myself for)? Did anyone wear any fabulous sequin pants under their hospital gown? If I'm passing out and throwing up on myself I want to do it in style.

[juliegee]

Love your attitude. No personal advice as I've never done it. But, my son did & it wasn't pretty. You described it well.

When they wheeled him out with 2 IV bags- one on each arm. He said, "Just a normal day." He thought it simulated his everyday symptoms (without IV meds) VERY well.

When I have to have hospital tests that are distasteful to me, I joke with everyone and "check out of my body." I tell them I'm putting myself in a happier place. Do what you need to. Repeat to yourself, "I am not a body. I am so much more."

Let us know how it goes. I'm sending lots of good vibes your way.

Julie

[Tachy Phlegming]

I was very specific about asking for oxygen before (and after) the test (and I only dressed comfortably). They didn't want to give me oxygen (I think one person on here did get oxygen for that test -- and there are reasons oxygen helps diminish the adverse effects of low blood pressure). So if I were indulging my sense of humor (and trying to obtain good post-test care), I would wear blue lipstick and blue nail polish along with tight spandex pants if I had to do it again. Sequins would be good to reflect the blue onto skin ...

You also might concentrate on looking beautiful and dressing to the nines, so that you don't think about the test. (And of course, you at least want to look beautiful when you feel so awful with wild blood pressure or pulse swings)

[flop]

When I had my TTT I went dressed in a t-shirt, stretchy trousers and flat shoes. DON'T take your shoes off - standing barefoot on a hard platform is uncomfortable, I had to ask the technician to put my shoes back on for me!

Take some spare clothes just in case. I got very hot and sweaty so a clean t-shirt and some body spray was welcome afterwards.

Before the test starts ask if they intend to give you meds, and if so why? You can confirm a POTS diagnosis without meds. Contrary to belief you don't need to pass out durring the TTT to get a diagnosis. I did manage to hold out for the full hour (only just HR 179, BP 96/90) but my cardio said to let them know if I really thought I was going to faint and they would put me flat before I fainted.

Flop

[Detrick7]

Maybe I am weird, but I was looking forward to my tilt table test. My cardiologist told me his was very certain I had NCS, regardless of what the test said, so I was not worried about the actual result. As you have probably read there are false positives and false negatives. Any test that can help the doctors treat my symptoms or eliminate other things wrong I am all for.

Wear whatever clothes you are comfortable in. I wore athletic pants, a t-shirt, sweatshirt, and tennis shoes. I had to take the sweatshirt off to put the hosiptal gown on but that was it. I know fainting is not fun, and I am lucky that I just almost faint, but unlikely that it is pretty much daily. However, my mindset going into it was, this happens to me pretty much daily, so if they can make it happen in a controlled medical setting bring it on.

I almost fainted three times during mine, twice with no meds, and once with. I don't remember the name of the medication, but it was something that sped up your heart rate. I can only speak for what my cardiologist said, but he said he uses the tilt table test more for determining treatment than diagnosis.

Good luck, hope your test goes well.

[MomtoGiuliana]

I also looked forward to my test b/c I suspected that finally it would provide info for a diagnosis--even tho at that time I had never heard of POTS and had no idea what was in store.

I was very sick at the time and essentially wheelchair bound due to weakness and lightheadedness when standing. No meds were administered--and I agree there may be no need for you to have meds--and it would be good to ask why they use any if so.

Mine was very simple, they took my bp and heart rate lying down for a few minutes. Tilted me up to a standing position and my heart raced faster and faster until I was at 160 bpm after perhaps 2 minutes. I started to feel light-headed and told them that and they put me down and it was over.

[prettyinpink]

Like someone else said-the test isn't to make you faint its to see if standing induces symptoms. As soon as my pressure started dropping fast they flipped me down. However, I had one of the worse migraines I've ever experienced afterwards and had to lay down in the dark all day so I wouldn't plan any activities after your test just in case it makes you sick or gives you a migraine. I did feel VERY safe during the test. Usually you are very securely strapped to the tilt table and someone is watching you and your vitals the entire time.

[Guest tearose]

Be in comfortable clothes, bring a change of clothes and plan on resting or sleeping later that day.

Your body will be carefully monitored. Hopefully you will not have to have any more after this.

I'll be sending you strength! oh, forget the party hat and bring a pillow.

[lauralulu]

What's the purpose of giving meds that can make the symptoms (such as increased heart rate) worse? I can't work that one out...

[poppetkazutaka]

I had the one at the hospital and then the one at Dr Zia's which is the one he learned at the Mayo Clinic. The one at Dr Zia's was more complex with all these bp cuffs (even a little one on my finger) and it was the one that I had an attack on. But even then they just showed me as 'borderline' autonomic dysfunction, because apparently I'm hypersensitive to bp and heart rate changes. It really didn't go up too high but if it even goes up a little too high over normal I start to get sick.

Ie, I run best when my bp is "low" or around 105-110. They call normal around here about 115-118. If my bp starts to go to 120-130, I get dizzy and headachy and my chest starts to ache. 130-140 and I'm panting and sick. 140 and higher and I'm flushed and worse and down I go. My bp crawls to 120 through the day, so I have to make sure to lay down or rest at times when I've had heavy activity (walking at lunch and walking while working) so that the bp can stablize. I tend to overwork myself into a sick migraine because I'm just one of those pushers. XD

But yeah. Tilts are not that bad. You lay down, they strap you onto the table, they put all these little leads on you, then the bp cuffs on your arms and fingers and maybe around your body, they sit there and they watch you. Just make sure your nurse doesn't run off like mine did cause sure enough you'll have a problem the minute she does. XD

I likened it to getting ready for winter! You felt like the kid who couldn't put down his arms you were so tightly coddled in the bed. If you fainted, you weren't going ANYWHERE. XDDD

[tinkerbella]

My last test lasted up for only two mins, it was like a code going on I ended up fine, but I became a classroom case for the doctor. LOL they never saw someone stay in tachy so long. I swear it was from all the cortisone and florinef I had just been started on. Next time I'm doing the blue lipstick and polish thingy just for fun, thanks for the idea, I'm that type of gal.

Bellamia~

[chipper]

This test was my saving grace. Finally a test to explain why I had been sooo sick for sooo long. It is an easy test and will help the doctor's know what meds. to give you. I kept my regular clothes on and stayed upright for almost 3 minutes. Try not to worry, it is not too bad.

[Detrick7]

What's the purpose of giving meds that can make the symptoms (such as increased heart rate) worse? I can't work that one out...

To try and increase the chance you will faint. Some doctors do this, some don't. I was given a medication to increase my heart rate after about 15 minutes because I had not fainted, I almost fainted twice, which was common since I don't normally actually faint. I almost fainted again, and then the test was over. I was fine with the medication, if me actually fainting would help the doctor treat me better great.

As I mentioned in the previous post the doctor said the TTT was not to diagnosis but to help treat NCS. He also said they want to induce a faint, hence the medicaiton, if at all possible because sometimes people's hearts stop during the faint for a few minutes, which obviously is not good. If that were the cause treating NCS can get a more tricky.

Some doctors don't even like/use TTT anymore. My neurologist who referred me to my current cardiologist suggested I get one, but then proceeded to tell me why they are not reliable and many doctors don't even use them anymore.

[Christy_D]

The day my son had his, he was having a good day, so his came back borderline. His legs did turn purple though.

They had him take off his shoes, and he said his heals were killing him.

[erikainorlando]

Ihad heard horrible things about the TTT but I was so sick I acctually welcomedany test that might indicate some definative answers...anything other than we don't know what is wrong!!

i didn't have any meds. I was layed down...took my hr (it was around 85). I was put upright and my hr went to 155 in about 20 seconds. Wewatched it remain that way for about 30 minutes...I started talking and watched it go higher..Doctor said "well...as I thought in my office...it is POTS".."drink a lot take beta blockers and eat SALT".

That was it..easy

Erika

[TypewriterGirl]

Well today I had my Echo and TTT. It was not as positive as I hoped it would be, although I did have tons of compliments on my makeup.

My Echo revealed that I have a interatrial shunt in my heart, which was kind of scary to hear (and see), but apparently doesn't need any treatment. I'm having a hard time finding information online about it, but basically the septum that separates the chambers of my heart at the bottom is kind of dancing around and flaps open because it didn't close at birth. They said that 5-10% of the population has this issue.

Apparently during the TTT I beat the hospital record and passed out in under 2 minutes. My heart rate was past 195 at 60 degrees up and my blood pressure was below 50. The last thing I remember was feeling the worst I've felt in my life and asking if I could be done, and the nurse scrambling for a manual BP cuff because the electric one being used couldn't get my low reading. So I now know that OFFICIALLY I have POTS. POTS party at my place - G2 shooters and salt cookies for everyone!

I had tried Acebutolol before and had a bad reaction, and the doctor put me on Midodrine in addition to .05 of Florinef 3x a week. I'm not very good at tolerating meds.

[TypewriterGirl]

Well today I had my Echo and TTT. It was not as positive as I hoped it would be, although I did have tons of compliments on my makeup.

My Echo revealed that I have a interatrial shunt in my heart, which was kind of scary to hear (and see), but apparently doesn't need any treatment. I'm having a hard time finding information online about it, but basically the septum that separates the chambers of my heart at the bottom is kind of dancing around and flaps open because it didn't close at birth. They said that 5-10% of the population has this issue.

Apparently during the TTT I beat the hospital record and passed out in under 2 minutes. My heart rate was past 195 at 60 degrees up and my blood pressure was below 50. The last thing I remember was feeling the worst I've felt in my life and asking if I could be done, and the nurse scrambling for a manual BP cuff because the electric one being used couldn't get my low reading. So I now know that OFFICIALLY I have POTS. POTS party at my place - G2 shooters and salt cookies for everyone!

I had tried Acebutolol before and had a bad reaction, and the doctor put me on Midodrine in addition to .05 of Florinef 3x a week. I'm not very good at tolerating meds.

[MommytoSJEA]

Well now you know and knowing is half the battle Sorry the test went crappy (or should I way well???) I dont tolerate meds well either. Hope they work for you though. I keep hopeing for the right combination to just click and feel better.

~Kelli

[Guest tearose]

So glad the ttt is over for you!

Now rest up. You will figure out a treatment plan.

Have you tried waist high compression?

[TypewriterGirl]

So glad the ttt is over for you!

Now rest up. You will figure out a treatment plan.

Have you tried waist high compression?

I've never tried compression hose, but I'm up for anything. Until now I've been on a high salt, high fluid diet. I take .05 Florinef 3x a week and Thermotabs. I've tried Acebutolol but my blood pressure got way too low after my first dose, so now trying the Midodrine route - so far no strokes! I'm half-joking and half-serious. I hate being on any medication that can kill me. The scalp tingling was an interesting experience.