Tilt Table Results

[SeattleRain]

I had my TTT yesterday and it went pretty much as expected.

Some questions.

1) They only tilted me to 75 degrees. Did they tilt any of you to 100?

- I preferred to be completely upright but the nurse said they do 75 because if there is an issue with blood pooling in the legs, it will show up better at that angle since my muscles aren't contracting as much to help force the blood up. I don't dispute that, but it felt like I was lying up against a wall the entire time. When I'm out in public and feeling light headed, I'll go lie up against a wall at about the same angle if I can't sit down....

2) Did you guys get Isuprel (Isoproterenol)?

- Probably one of the worst feelings I've ever had in my life (physically). I was about to pass out just lying down.

Without the Isuprel, my baseline was about 60bpm and it peaked within the 30 minutes to 110 or so and stayed between 90 - 110 during that period. The cardiologist didn't want to diagnose me with anything, including POTS. He said the 30bpm increase criteria for a POTS diagnosis is a "soft" diagnosis - not as solid as the 130bpm or more criteria.

So now he wants me back on a beta blocker (which my other cardiologist agreed that would make things worse), and if that doesn't work, try Florinef and if that doesn't work, Midodrine.

He said he doesn't care about the diagnosis and just wants to try and treat the symptoms. I'm not upset with him but I'm the total opposite. I want to know exactly what's wrong with me. I'd sacrifice treatment at this point for that, just to know what I'm up against.

I think I'm going to follow up with my other cardiologist and try to see if we can rule out anything else that could be causing my POTS symptoms (to a certain extent).

Any advice is much appreciated.

Thank you!

[SeattleRain]

Btw, has anyone had problem with nurses trying to find a vein? The first nurse spent a good 3 - 4 minutes sticking a needle in and out of the top of my hand. She kept jabbing it in, then moving it in and out, left and right. I hate needles, so as you can imagine I was cringing the entire time. She couldn't get a vein on the left hand so she went to the right arm and repeated the process. In and out, jerking it left and right. She gave up and finally another nurse came and found a vein right away. I think I felt like passing out more during the needle torture tactics than I did in the TTT.

[bebe127]

Hi Seattle,

I don't have any advice (sorry), I can only relate my experience with the TTT. I told you on the "Adrenaline Rush" thread that my BP actually increased along with a +80 HR increase. I was fully tilted to upright. I have never had blood pooling, so maybe that is why they tilted me all the way up, or maybe different dr.s do the test differently. Also, the dr. shot me up with something (don't remember the name) so as to stop an arrythmia if I had one and it just made me feel worse. I had the test done three times as the first time they tilted me the dr. went out of the room because he said that "this could take some time, most people don't react for about 20 minutes". Well, I reacted within 3 minutes. He then came back in and repeated the test to see if I would have the same reaction...I did. The third time is when he shot me up with the medicine. Each time, about 2 minutes in, I could feel the "attack" coming on and I would say, "It's coming, It's COMING, IT"S COMING, IT"S HERE!!!!" I started crying and getting all freaked out. They would put me back down and within about 5 minutes, everything was pretty much back to "normal". The last time, when he gave me the medicine, I thought I would die. I was crying, freaking out and felt as if I couldn't breathe. I can't remember what he did after that other than to put me back down. I was exhausted after the test and all I wanted to do was sleep. My husband was with me when the dr. came into the room post test and told me that I "probably have POTS". He told me that the only medicine for this was florinef, which now I know is not the case. Anywho, he said he couldn't/wouldn't put me on that because it is supposed to raise blood pressure and since mine was already elavated, putting me on the meds. could give me hypertension. His advice, and this is a direct quote: "Eat more salt, drink more water, and go live a normal life." This from an electrophysiologist.

I am on a beta blocker (and Xanax for anxiety) now and it seems to work as it is intended although, I still experience tachy almost daily and my bp still fluctuates. These were prescribed by my GP, a dr. I began going to a year or so after my dx. I can function a bit better now, but I'm not sure if this is because of the meds, or that I'm just used to the symptoms now, or that I've just found my "new normal". Everyone is different as far as meds go. I know that a friend's teenage daughter was just diagnosed with Dysautonomia and put on Alpha Blockers and is doing much better. I think it all depends on how your vitals react.

As far as getting blood drawn, I too have issues with this. Sometimes they can't find the vein, other times my blood just drips into the tube. In my case, I think it has to do with dehydration. A few days after I last had blood drawn, I looked as if I had been abused. I had bruises on both inner elbows that nearly took up the entire width of my arm. I even had a bruise on one arm that was inches away from the needle site and about 3in. long and 2in. wide.

I hate it when dr.s say they just want to treat the symptoms! Maybe WE want to get to the bottom of this whole thing. Find out what is causing it. It so often seems as though dr.s put us into their little box and if it is not in their med books then they just try to treat the symptoms. I do think that treating the symptoms is important to some extent, so that we might get some bit of relief even if temporarily, but I think it is important to find a dr. that will continue to work with you in trying to figure out the root cause and try to treat that.

I do hope you have dr.s that will work with you to find out what is wrong exactly. It is so hard and frustrating I know, but try to keep going. You seem like the kind of person that is not going to give up and that is such a good thing. I wish you all the luck in getting results and finding relief!!

Be well

[misstraci]

Hey Seattle! Glad the test is over with and behind you and that it wasn't much more horrific than you imagined.

1. I feel like I was up 100% but I still felt like you, that I had that "wall" behind me, It wasn't like me waiting at the train station in the middle of nothing, with nothing to lean on or sit on, etc. Even when I felt terrible on the tilt table, i didn't have the anxiety and fear associated like i do in real life situations, of course i also felt more comfortable that doctors and nurses were right there.

2. I'm not sure what Isuprel is but I'm so sorry it made you feel horrible, is that the same thing as nitroglycerine? because that is what they gave me and I feel your pain, that was the or one of the worst experiences in my life!!! 5 seconds after, i started sweating profusely, extreme nausea, my hr was 180 and my blood pressure 40/20, that is when they dropped the table. I was crying, i was blacking out and it was awful!!! the doctor, however, held my hand, it was very nice, he was a cute young dr too, so, it made it all kinda feel better

I'm like you, I don't want to just put a bandaid on the problem, i was to FIX the problem. I say don't take the BB to cover up the issue unless you just really feel that is the right decision. Let us know what happens, and about your progress! also, sorry to hear about the vein poking and prodding, that sounds like no fun at all. I've never had that issue before. Sorry I don't have "advice", just wanted to tell you that i understand and hope you get to feeling better.

[khaarina]

Yeah the Isuprel is rough. I passed out within maybe 2 minutes of the injection, but it was a long 2 minutes, felt like death. I also felt the same way you did about the 75 degree tilt. When they stopped raising me up I was like, really? I felt like I might as well still be lying down and I got really nervous about leaving there with a false negative. I didn't get the quick reaction I normally do when I am standing on my own, not until the injection, and I blame that on the 75 degree tilt. Anyway, it sounds like your doctor is wary about diagnosing you with POTS. I would definitely get another opinion and keep looking for a cause until you are comfortable with the answers you have. Oh and the vein thing, YES. It has been that way all my life. Some nurses say my veins are small, some say they move around when they insert the needle. I don't know what it is exactly, but is is not unusual for me to leave the hospital looking like a heroine addict with bruises all over my hands and arms. I'm kind of a shy person, but when it comes to needles I tell them what their in for. This makes them take more care or enlist someone more skilled to do it.

[HopeSprings]

Sounds like he's making up his own rules. I've never heard of this "soft diagnosis" for POTS. One of the main diagnostic criteria for POTS is a 30 bpm increase or more on tilt test or standing within the first 10 minutes. This definition seems pretty well agreed upon by the experts at the moment. At 30 minutes you had a 50 point increase. Do you know where your heartrate was from minutes 1-10? My heartrate only went up to 108 on my TTT - still met the 30 point increase criteria, but nothing dramatic. The Dr. at the time called it "mild orthostatic intolerance" which was annoying because what I go through is NOT mild. He later called it POTS. The tilt test did not capture what I go through on a daily basis. I knew through home testing that things were much worse and a 24 hour holter monitor proved it. Have you home tested with a heartrate monitor? Maybe you should do a Holter Monitor? I think it's going to be hard for you to find someone to look for the underlying cause without firming up the diagnosis first. Maybe see someone else?

[badhbt]

Where did you have your TTT done?

[Altruism]

1/ Yup, 75 degrees for me too

2/ No, no injections, but I'm a severe case and lasted only 7 secs on the TTT!

3/ Yup, terrible veins and lots of trouble.

I'd still choose your test place over mine (aka Swedish over UWNC), because at UW there was no doctor in the room. Just a tech. The last time my results were "inconclusive" regarding the other autonomic testing, so I'd tick to the Swedish guys

[Chaos]

Protocols for TTT usually are to tilt people up to 70-80 degrees. When you are tilted up to 90, you feel like you are going to fall over onto your face and you'll be using a lot more of your leg muscles. When they're doing this test they are trying to avoid you using the "muscle pump" in your legs which assists in circulation.

Not sure where this doc is getting his criteria.... I haven't seen 130 as a criteria- it is usually 120. And a 30 bpm increase is usually diagnostic for most docs- but wasn't for my local doc either.

Sorry this has been so frustrating for you!

Edited January 24, 2013 by Chaos

[Edin]

Sorry I don't have any advice, but I can share my experience:

I did the TTT a few years ago at the Mayo Clinic in Rochester, MN so my memory is a little fuzzy.

I can't remember the entire duration of the test, but I spent ten minutes at 75 degree angle, no higher.

The entire time I had something injected into my arm, not sure what it was. They also had me doing this breathing test at every angle I was at.

Surprisingly enough, my heart beat got into the 300s. I was barely conscious at the time, but my mom told me the nurses were panicking a little and she had to convince them to let me finish the test so I could get some results. When they laid me back down my heart rate quickly dropped to around 90bpm. It was a very odd experience, at the time my highest bpm was in the mid 200s, so whatever they injected me with must have made it shoot up.

[joyagh]

Sounds like he's making up his own rules. I've never heard of this "soft diagnosis" for POTS. One of the main diagnostic criteria for POTS is a 30 bpm increase or more on tilt test or standing within the first 10 minutes. This definition seems pretty well agreed upon by the experts at the moment. At 30 minutes you had a 50 point increase. Do you know where your heartrate was from minutes 1-10? My heartrate only went up to 108 on my TTT - still met the 30 point increase criteria, but nothing dramatic. The Dr. at the time called it "mild orthostatic intolerance" which was annoying because what I go through is NOT mild. He later called it POTS. The tilt test did not capture what I go through on a daily basis. I knew through home testing that things were much worse and a 24 hour holter monitor proved it. Have you home tested with a heartrate monitor? Maybe you should do a Holter Monitor? I think it's going to be hard for you to find someone to look for the underlying cause without firming up the diagnosis first. Maybe see someone else?

In fact, new researchers are saying that more than 27 bpm increase on a STAND TEST is more accurate, b/c it relies on the skeletal muscle pump, which the TTT does not. I am neg for POTS with the TTT (25 bpm increase) but with a stand test, I get a 33-39 bpm increase. I have ALL the symptoms of hyper POTS. I think TTT is diagnostic for classic POTS, but maybe not for hyperadrenergic POTS, as the physiological aspects at play are different.

[HopeSprings]

Joy - I'm re-reading my post trying to figure out if I said something innacurate? I said heartrate increase on standing or tilt test. I think I know the research you're referring to and if they're correct, then maybe Doctors should do both the stand test and the TTT just to be sure they don't miss anyone. There was a thread here about this (wish I could paste, but my computer won't let me for some reason!) Some people said they passed the stand test, but failed the TTT... so I guess it can go either way. The article also said rely more on symptoms for diagnosis and not just numbers - and I think that makes the most sense. You shouldn't feel terrible just from standing up!

[seattle chris]

I did two TT tests. The was first at Cleveland Clinic and they had two intermediate stages of 30 and 45 degrees before moving me to 70 degrees. I had a similar experience with the IV - my arm felt sore as if the needle weren't smoothly inserted and thinking about this may have made my symptoms worse once upright (no isuprel though, only there for an emergency). I only lasted two minutes. Interestingly, there were two nurses and a doc on standby and the blood pressure monitors spooled every 30 minute or so.

I did another at the Univ of Washington. They moved me directly from supine to 70 degrees without an intermediate phase. There was no IV and only one technician running the test. They had a continuous blood pressure monitor on my finger. They terminated the test after ten minutes at max tilt as my bp was down to 60/40. Upon recovery, there was no circulation in my (cold) hand so the monitor stopped recording. They had a neat blood pressure/heart rate chart that I could view afterwards.