After reading thru many of the posts on this site, I have to say I am lucky to have found great doctors eary on. I was hospitalized in Nov 2007 and diagnosed with ITS/Pots. I was put on MANY meds without much success. I have the tachacardia but unlike many I have read on this site, my BP is very high at rest.

My cardiologist sent me to a Electrocardiologist last week and he has me set up for a tilt table test. Could anyone tell me what to expect?

I am not working at the time due to high BP and resting pulse of 125. I have lots of time on my hands right now and so glad to have found this site (my doctor suggested looking for you all). My mind is racing with thoughts and questions but I will end now. TALK WITH YOU ALL SOON

Hi Susan,
I'm sorry you are dealing with this diagnosis and not feeling well. Glad you are seeking support here. I have found a wealth of management tips and know I am better because of the tips I have learned here.

Much has been written about the tilt table test. You can go to Find at the top of this board and search tilt table or TTT and lots of good info will be listed for you to sift through.

More later,

Hi Susan -

I'm glad you found this forum and also that you found a great doctor from the start. It took me awhile to get to the right Dr. but once I did I was so grateful....

Here's some info on the tilt based on my experience. I have had three tilt tests since my ordeal began. They will strap you in to a table with your feel resting against a ledge at the bottom and you will be hooked up to a heart and blood pressure monitor. You should also get an IV with fluids available in case you faint or get very lightheaded. They will check your resting heartrates and BP and then slowly raise the table so that you are in a standing position. Your heartrate and BP will be measured every couple minutes or so and your reaction will be watched closely. Depending on your circumstances, you may have an immediate reaction (if you've been diagnosed with POTS your heartrate may go up very quickly and you may experience some dizziness) or it may take more time. In some cases, you may get lightheaded or even pass out if your BP drops. You may not feel that bad at all. The Dr. may give you some nitro spray under your tongue or something in your IV to try to induce a reaction. This will possibly make you dizzy and may make your heart race a bit faster like your exercising (and the silver lining is that you will be burning calories!!).

In my last tilt test (2/28), my resting heartrate while lying down was around 92. In the few seconds it took to raise the table I jumped to around 145. With the nitro, my heartrate increased quite a bit more. This time, my blood pressure did not drop but stayed relatively high. I did experience quite a bit of lightheadedness but did not pass out. Us potsy people don't always pass out during tilts.

I was terrified before my first test because I was so afraid of passing out and how sick I would feel. It really wasn't that bad - The Dr. and nurse will be right there with you watching you closely and you just need to tell them how you're feeling. Remember, everything is happening in an controlled environment. My Dr. talks to me alot too which helps. The test is very helpful for them to help determine a treatment.

Just remember after the test is over to take your time getting yourself back together and ready to leave. Don't jump up too quick off the table and if you did get very dizzy or even faint make sure you take it easy for awhile.

Please let us know how you make out - I'll be thinking of you....Remember we've all been through it and come out the other end!

Thank you trebleclef.....

Your words were very helpful. About how long did yours take? I think being straped on the table is one of my scarry issues. I am very claustraphoic (sp). I am sure just that part will raise my pulse/BP.

I am having a rough day today but trusting tomorrow will bring more sunshine.

My son had 5 TTTs a few weeks ago at Mayo Clinic, and if he can do it, so can you!

They lay you down on a comfy table (my son's had all kind of padding, so it wasn't a cold table) They usually let you lay down for a while to get a good resting HR. They attach leads to your heart (for an EKG reading) attach a finger pulse monitor (I call it the ET monitor) They cuff your arm for a BP monitor, which they will take several random times, etc. Depending on your Dr, they also gave my son an IV (to draw blood to evaluate cathcolamines (sp) to evaluate the hormones that trigger some POTS symptoms) With my son, they drew blood laying down, and then later when he was up, but it may not apply to you. He's had TTT when they didn't do this.

Don't worry, it's not clastrophbic at all, the straps they put on may not even be tight. They are just there so his legs won't buckle.

There is a platform at the end of the table, where your feet will be at all times.

When they take your resting HR, they will talk you through everything that is going on. Then they tilt the table upright (about 80-85 degrees) and then they take your pulse at 1 minute intervals. They can see what your heart and pulse are doing on the monitors right away. My son didn't last more than 3 minutes, because he was ready to pass out the first time. They also took blood when he was upright, through his IV, but it may not be the case with you. He did much better at the other TTT. (My son was a test case for several things: hormone testings for POTS, new promising medications for POTS)

Like everybody that has been through this knows, it's not so bad.

The tests vary according to what they are doing. The very first test that my son did was pretty quick (without the IV stuff) about 20 minutes total from into the room, to leaving, but don't get up too soon!! They let my son rest, brought drinks, crackers, etc before he got up and left. (you may want to bring crackers, water, etc to your testing)

Just remember to relax, my son noticed weird stuff on the ceilings when he was laying there for his tests, (they had pictures, posters, etc) LOL

You can e-mail me at creativedesigns85@yahoo.com if you have any questions.

Good luck, let us know how it goes!

I think my tests were about 20-30 minutes each but it depends on your reaction. Being strapped in may sound ominous but it's really okay. The room is usually cool and once you're raised up you will hardly notice the straps at all.....

By the way, do you live anywhere near Charlestown, West VA?

I had a tilt table test done ..a little disorenting,but at least I DID not pass out.
I bid you much sucess in findin all of the answers that you seek...Take care OK

WOW, you all are so great. I have felt so alone with my issues and realize that there are so many people that are or have experienced the same things. My cardiologist & electrocardiologist were very knowledgeable with ITS/POTS but my primary care physician never even heard of it. I thought I was the only one on the planet....LOL

Ceravelo.... read all night about posts on TTT, thanks for the suggestions

Trebleclef.... I live in Charleston, West Virginia. Pretty far from Charlestown.

My TTT is scheduled for 3/27/08 and I see my doctor a few days after the test. I will keep reading thru the website and sucking up the information you all have like a sponge. I would not wish this on anyone but I AM SO GLAD I AM NOT ALONE

Much Grattitude

Hi, Susan S,

Welcome! I just wanted to say hello. You have already received some really good information about TTT. My son did not pass out, but he did feel lousy afterwards. He had an IV bag of fluids in the recovery room, ate all the lunch I brought and had to be wheeled down to the main entrance. It took about an hour AFTER the recovery room time for him to stand up. Basically, he felt very weak and trembly (is that a word!?!) Definitely have someone go with you to help you home.

I am glad you have doctors who found out quickly what was wrong. That is my hope for the future, that no one has to go YEARS before being diagnosed.

Glad you are here, and let us know what happens after the 27th.

Take care,

Judi

I have been looking around but have not found a source that might have information on support groups with our common issues in Charleston West Virginia.... or just in West Virginia.

I am a recovery opiate addict (got that way from lots of pain med with my previous surgies). I attend meetings every week and TALKING TO PEOPLE WITH COMMON PROBLEMS IS HUGE STRENGTH. And that is what I see happens here.

Again I have graditude for all my new friends!!

It has been awhile since I have posted. I had my TTT and it was somewhat like a torture chamber...LOL

They had me lay flat for 30 minutes with vitals being taken frequently. Then up I went.... My pulse went up to around 185 within a few minutes, my BP contunued to also increase 180/125. I was dizzy but did not faint. I was sweating like I was running a race. I was upright for 45 minutes and the tech said that my vitals did not recover much for the entire time.

As I have read, I was exhausted for the rest of the day. My physician read the results but did not comment over the phone but scheduled me to come into the office next week.

- Does POTS usually increase your BP upon standing or just your heartrate?

- Is excessive sweating a normal thing?

They tech told me that the doctor would probably do ablation (sp) study or heart cath but nothing was said to me by the doctor.

I guess I will just wait to see how the appt goes. Hope everyone is finding enjoyment in some part of their day.

Hi Susan,

I'm so sorry you had such an awful experience. I'm surprised they kept you vertical for so long with your symptoms. They only kept me up for about 20 minutes and I thought I was going to die. My hands were sweating (similar to hypoglycemia) but the rest of me was dry; face felt flushed. My BP didn't change much but my heart rate remained elevated and did not decrease until well after the test was done.

I hope you get some answers soon. Keep us posted.

Tish

Hi Susan,

Thanks for sharing your experience. I am going for my first autonomic function screen on Tuesday and it is to include the TTT. I am still looking for a diagnosis, and am looking forward to the screen for this reason.

I am also a bit nervous, because I am really hoping that the TTT will lead to a firm diagnosis, and if it doesn't, I am not sure where to go from here. I am curious as to what type of specialist is interpreting your TTT results. Mine will be a neurologist that specializes in ANS and related issues. If it is the cardiologist that set up the test for you, I think they look at different information than a neurologist would.

It is my understanding that a diagnosis of POTS can be made upon observation of the increase in heart rate, and while it is common for BP to drop, that is not a requirement for the diagnosis, and some POTS patients do have the BP go up.

It is comforting, even though you had a tough time with the test, to connect with others going through the same things.

Another Susan

Good Afternoon Susan,

I have been lucky with with the doctors that have helped me through this journey. My Primary care doctor had me seen by a Cardiologist while in the hospital.... after he diagnosised me with ITS, he sent me to an electrocardiologist to confirm POTS.

The electro doctor is the one that set me up for the tilt test and he does the evaluation too. He is a big wig (in a good way) at a hospital about an hour away.

After I get a clear diagnosis and the electro doctor shares his plan, he also wants me to go to a clinic that is set up for people like us to learn some new living ways. He did not give me a lot of info about it yet.

The last thing this electro doctor told me when I left his office was this is a long haul and he would go it WITH ME...... I am so lucky.

I have to say that the test was a rough time but I was excited to have it so I can continue with a plan of action.

Susan, my thoughts and prayers are with you. Let me know how your function screen and TTT go.

Well I went back to the electrocardiologist last week and he says I do not have Pots. When I was stood up on the TTT, my BP increasd subsantionally and never recovered and my pulse increased the entire time.

So I have "inappropriate Tachycardia Syndrom" Doctor is chnging many meds , another heart monitor,
Then probably some abliation studies.

MORE LATER