Delayed orthostatic intolerance

[Dr.Patient]

FWIW… I've seen Dr Jaradeh @ Stanford (he runs the Autonomic Disorders Clinic) twice, and he's probably the best neurologist I've ever had dealings with. And there have been more than I can count in my lifetime.

That being said, Dr Jaradeh wouldn't be my first choice for diagnostics if you already know that your particular flavor of OI is delayed. Jaradeh does a 20 min TT test along with several others like QSART, so he failed to find my delayed OI. I had a previous one done elsewhere that was 45 min long, and the OI kicked in around 35-40 min with elevated HR, hyperventilation, dizziness, et al. The HMO doctors who did that test claimed I had a "self resolving panic attack" which was totally bogus according to Dr Karen Friday @ Stanford Cardiology, whom I had seen several years before Jaradeh was hired.

She said it was obviously delayed OI because panic attacks don't "self resolve" until you pass out from the hyperventilation, which I didn't do. The hyperventilation resolved the elevated HR with additional oxygen, which was my body's stop-gap measure for hypoxia. The blood was still pooled in my lower extremities when they halted the test shortly after the hyperventilation stopped. When I got off the table, my knees gave out from under me. I would have crashed hard on the floor had the cardio nurse not been supporting me at the time. Of course, none of that was written up in the report since the doctor running the test had already left the room.

Anyway, Dr Jaradeh is first rate. But his 20 min TT test is not a good fit for delayed OI.

Have you since made Dr.Jaradeh aware of your delayed OI report? A good doctor will like to know...

 

[Sushi]

It is a little more obscure, but I think it's generally recognized as a manifestation in Neurally Mediated Hypotension. Though NMH isn't as catchy as POTS, so everyone talks about POTS

It is definitely well known by autonomic specialists. The problem is that there are so few of them.

I wonder why it's not widely recognised?

I think it is recognized by doctors who have made any study of dysautonomia.

Passing out is not part of the diagnostic criteria, so you could still have POTS.

When I had the long version of the TTT, my automomic specialist told me to stop the test if I thought I might faint or felt really bad. He didn't want me to faint--he said that he could get all the data he needed from pre-syncope.

I have heard that a few cardiologists understand autonomic dysfunction, but electrophysiologists or autonomic specialists are more likely to recognize and treat delayed OI symptoms.

That is my experience too. My cardio is aware of dysautonomia, POTS, NMH...but I don't think he would attempt to treat it.

Just posted about my experience with this. And you are correct that many doctors don't do the longer version of TT, including Dr Jaradeh @ Stanford. Probably cost is the main factor.

From what I've seen when people mentioned the cost of their short test, I think that is true. My "long test" was about twice as expensive, though insurance paid for it.

 

[out2lunch]

Have you since made Dr.Jaradeh aware of your delayed OI report? A good doctor will like to know...

He supposedly had a little chat with Dr. Friday about it, but I don't know exactly what they discussed. My neuro problems are now leaning more towards CNS than ANS, which is why I'm no longer seeing him. I had severe ANS problems like NMH over a decade ago, but that has since cleared up, given the negative results on Dr Jaradeh's testing. My delayed OI is most likely EDS related, according to Dr Friday and the EDS specialist I saw last year.

 

[minkeygirl]

@Kyla i'll check it out but unless the recommend someone in my plan I can't go.

 

[alex3619]

which for many of us with Ehlers-Danlos,

EDS is something different again, a third thing that can feed into this. I don't think we even now understand the physiology of the different types of EDS, and its possible that different types may have different OI subgroups.

 

[out2lunch]

EDS is something different again, a third thing that can feed into this. I don't think we even now understand the physiology of the different types of EDS, and its possible that different types may have different OI subgroups.

I totally agree.

Researchers are just now beginning to focus on EDS as a direct cause of gut problems like IBS, due to abnormal tissue composition leading to dysfunctional intestinal behavior. In other words, things like gut motility and blood flow and perhaps even structural integrity are all potentially compromised by the EDS.

Harvard was conducting a survey study of EDS patients who suffer with IBS but not IBD. They're seeing strong evidence of IBS symptomatology that perhaps only EDS can explain. Makes sense to me if the collagen of the gut tissue isn't exactly what it should be.

Relate this to gut splanchnic pooling which Dr Friday said was a big issue for OI. She suggested I try the girdle binders to see if I could spend longer periods of time on my feet. As uncomfortable as these things are (traditional corsets aren't much worse), it did help a little with my OI. But not enough to justify the irritation from these tight spandex torso tubes. I'd rather just spend less time on my feet.

 

[Singout]

@Kyla Who are the two doctors in Ontario (I think you're here?) Thanks!

 

[Kyla]

@Kyla Who are the two doctors in Ontario (I think you're here?) Thanks!

Dr. Guzman (cardiologist) in Hamilton - there is also another cardiologist at the same clinic, who also deals with autonomic issues, not sure of the name

Dr. Kimpinski (neurologist) in Kingston

I have heard pretty mixed things about both, but they do specialize in POTS/OI/dysautonomia

 

[Cheshire]

In this lecture

Dr Klimas speaks about delayed OI. (at the beguining, 10mn).

 

[Sasha]

Thanks, @Cheshire, just started watching this and it's very interesting.

 

[Singout]

@SOC What is the "long form" of the TTT? Do you know where there's a description/protocol that I can request from my cardiologist? I've got my second TTT coming in 2 weeks. @Kyla The other doctor in Hamilton is named (I think) Morillo. Apparently the wait list is long, among other things.

 

[SOC]

@SOC What is the "long form" of the TTT? Do you know where there's a description/protocol that I can request from my cardiologist? I've got my second TTT coming in 2 weeks. @Kyla The other doctor in Hamilton is named (I think) Morillo. Apparently the wait list is long, among other things.

The description I know about is Dr Bell's Simple Test for Orthostatic Intolerance. I have my doubts whether a cardiologist will be willing to do TTT for that long because of the cost of using the equipment and staff for that long. You could do the test at home (make sure you have someone with you in case you get dizzy/faint) and take the data to your cardio for evaluation. You could take this article, which points out that 39% of patients demonstrated orthostatic hypotension only after 10 minutes and argue that your TTT should be longer than 10 minutes. I haven't read the article thoroughly, but I believe they recommend testing for 20 minutes.

 

[Singout]

Thanks--I've done the home test with these instructions several times (what got my GP to refer me for a hospitalized one). I think the one I did that said I was OK was for about 20 minutes.

 

[Sushi]

I haven't read the article thoroughly, but I believe they recommend testing for 20 minutes.

I haven't read that article but my autonomic specialist's experience showed him that the weird stuff often comes long after 20 minutes. My ANS started going wacky after about 30 minutes.

 

[SOC]

I haven't read that article but my autonomic specialist's experience showed him that the weird stuff often comes long after 20 minutes. My ANS started going wacky after about 30 minutes.

Same here. I think 30 minutes is better, but I bet it's hard to get most cardiologists to do more than 20 minutes since the standard is closer to 5 minutes. I guess the trick is to find a knowledgeable autonomic specialist instead of a cardio to do the test.

 

[ahimsa]

What is the "long form" of the TTT? Do you know where there's a description/protocol that I can request from my cardiologist

Here's one article I found discussing protocols (angle of the table and length of time) - http://heart.bmj.com/content/83/5/564.full An extract:

... a duration approaching 45 minutes would be optimal at present, and our own practice is to continue the tilt test for 40 minutes or until symptoms supervene.

I first learned about the link between ME/CFS and Orthostatic Intolerance back in 1995 when the study by Rowe, et. al. came out (see http://jama.jamanetwork.com/article.aspx?articleid=389684 ). I don't have a list of the exact protocol that they used in their study for the Tilt Table Test (aka, Head Up Tilt). I do remember that the duration was either 40 or 45 minutes in the first tilt phase, the passive phase without any IV drug (some form of adrenaline is sometimes given in later phases).

I've had two abnormal results on the TTT. Both times the sudden plummet in blood pressure would have been missed if the test had been only 20 minutes long. On my first test (1995) it happened a little after 20 minutes and on the second test (2003) it took 30-35 minutes. (I can't remember the exact times)

Perhaps an expert would have seen enough changes in heart rate, blood pressure, etc., to diagnose NMH at less than 20 minutes. But I don't know that for sure. The cardiologist running my test knew enough that fainting is not required for an abnormal response but he was not a specialist in autonomic dysfunction.

This post is a bit disorganized and rambling. My brain is not working all that great right now.

I hope this is helpful!

 

[ahimsa]

the standard is closer to 5 minutes.

That's a standard I've never heard.

I know that 40-45 minutes is considered long but I thought most tilt tests lasted at least 20 minutes.

 

[ahimsa]

A little more detail about the test from a Medscape article

http://emedicine.medscape.com/article/1839773-technique#c2

They list a range of 20-45 minutes. Also, notice this recommendation

Administer a 250-mL bolus of 0.9% NaCl for hypotension.

I got saline after both my tilt table tests. I am always amazed at how many patients who had a severe drop in blood pressure don't get any saline after the test to help ease their symptoms.

Also, at the end, there's this

Disconnect patient and allow patient to sit in chair for 5 minutes.

My first test I was stupid enough to drive myself. I didn't think it was going to be any big deal. Boy, was I wrong. After the test was done, after the IV saline and blanket (for some reason I was shivering all over after I fainted), I waited for at least 30 minutes before I felt well enough to drive myself home.

I think these days most doctors recommend that the patient arrange for a ride home after the test. But I'm mentioning it here just in case.

PS. One last link - http://emedicine.medscape.com/article/902155-workup

 

[SOC]

That's a standard I've never heard.

I know that 40-45 minutes is considered long but I thought most tilt tests lasted at least 20 minutes.

Maybe the papers I was reading are outdated. I'd certainly hope that 20 minutes is a minimum.

ETA:
@Singout, I just found this from the American Heart Association

After about 5 minutes, the nurse tilts the table more. Now you are lying at a 60-degree angle or higher. The nurse continues to check your blood pressure and your heart rate for up to 45 minutes.

That makes a lot more sense than the <10 minutes I was reading before. HTH

 

[Gingergrrl]

FWIW… I've seen Dr Jaradeh @ Stanford (he runs the Autonomic Disorders Clinic) twice, and he's probably the best neurologist I've ever had dealings with. And there have been more than I can count in my lifetime.

Anyway, Dr Jaradeh is first rate.

@out2lunch I know this thread is a few months old but I was curious if you would still recommend Dr. Jaradeh as an autonomic specialist? I have been trying to find one (a true autonomic specialist) with no luck and he would be about a 6-7 hour drive for us but do-able although I wonder if he has a three year wait like Dr. Montoya did?!

My MCAS doc who is wonderful thinks that blood is not perfusing my lungs and heart especially when I stand (and I have been using a wheelchair since last Oct due to shortness of breath when I stand) and get some relief from Midodrine even in the absence of it raising my BP which is chronically low.

Do you think Dr. Jaradeh could assess and help me with this? Does his clinic do vascular or endothelial testing too? I had a botched up barely 15 min TTT last Sept which was useless. The traditional stuff like Florinef and IV saline did not work for me.

Sorry to ramble again but very curious to hear more on Dr. J and Stanford Autonomic Clinic.