My tilt table test (info for my doctor)

[Strawberry]

I don't remember posting this before, but if I have, sorry! A few months ago I did the tilt table test. Dr Kaufman said it proves orthostatic intolerance. I want to see if I can get proper testing and treatment locally. I have had people in the medical industry say they haven't heard it phrased "orthostatic intolerance", so I want to know what to tell my doctor about it.

What kind of doctor (and with what kind of knowledge) should he refer me to?

What words or phrases should I explain to him (and referred doctor) if "orthostatic intolerance" isn't familiar?

Also, for the record, here is my test results. What type of OI would you think this is? All my life my BP was 90/60 (and a "rabbit" heart rate), but in the last few years went high. I am now being treated with a calcium channel blocker - Amlodipine. It has lowered my BP a bit, but also reduced my heart palpitations that I have found out now are MCAS/histamine related.

And if it helps with what I have specifically, I was shaking pretty badly at 5 minutes, swaying a bit. By the time I hit 15 minutes, my feet had a popping sensation, and I was shaking uncontrollably. Almost like mild convulsions or body spasms. I was afraid to go on as I was about to collapse. I was worthless for a few days after the test. Mild exertion does make my heart pound hard and fast, but I don't know if it gets high enough for tachycardia.

As always, thanks in advance!

 

[Sushi]

I have had people in the medical industry say they haven't heard it phrased "orthostatic intolerance", so I want to know what to tell my doctor about it.

What kind of doctor (and with what kind of knowledge) should he refer me to?

Orthostatic Intolerance is a well known term medically--I have never seen a doctor who didn't know what it was. There is no particular specialty dealing with dysautonomia, so you would probably need a recommendation from another patient. Trying to find someone locally might be hard as there are not many doctors in the country who know how to treat this condition. You might want to join to Dinet forum for recommendations. Good luck! I was lucky enough to see an autonomic specialist but they are rare.

 

[halcyon]

What kind of doctor (and with what kind of knowledge) should he refer me to?

I would recommend seeing someone that specializes in autonomic disorders, which are hard to come by. I've had bad luck seeing both cardiologists and neurologists about dysautonomia. They just don't understand it well enough.

If you're already coming down to CA to go to OMI, you might look into the Stanford Autonomic Disorders clinic.

 

[Strawberry]

Trying to find someone locally might be hard as there are not many doctors in the country who know how to treat this condition.

That isn't good news! Also, I should correct myself, it wasn't a doctor that hadn't heard of OI, it was an EMT and his nurse wife.

Thanks for the Dinet tip. I'll check that out.

I would recommend seeing someone that specializes in autonomic disorders, which are hard to come by. I've had bad luck seeing both cardiologists and neurologists about dysautonomia. They just don't understand it well enough.

Again not good news! Thanks for the tip on Stanford, I will look into it. I am done traveling for a while, far too exhausting. But if I must go to California again, its worth it.

 

[Sushi]

A few months ago I did the tilt table test. Dr Kaufman said it proves orthostatic intolerance.

Did he say any more about it, like what indicated OI to him?

What type of OI would you think this is?

Was this a poor man's TTT or one done in a clinic or hospital. There isn't much data there. A doc would probably need more in order to prescribe for you. Could you ask Dr. K what type of OI he thinks you have? I'd guess you weren't on meds when this was done?

 

[Valentijn]

Sometimes there will be a clinic at larger hospitals which focuses on dysautonomia, hypotension, syncope, and/or orthostatic intolerance. The clinic might have a variety of names though, or even be included as part of cardiology.

If you can find the clinic web pages for nearby hospitals, you can look to see if they have a relevant department, and if any of the specialists look like the sort of expert you need. Searching for "tilt" or "syncope" on the hospital's site can be easier than trying to figure out their label for the relevant clinic

 

[KME]

@Valentijn 's advice is good, I think, as it can be buried in unusual places. On the other side of the pond it is often done in the department looking after geriatric/Care of the Elderly/falls, so that could be worth looking for too. I agree, it's worth finding a specialist center.

 

[taniaaust1]

looks like he diagnosed OI based on strawberry getting symptomatic to standing rather then one the readings being done. One doesnt have to have one of the well known OI disorders to get an OI diagnoses. None of the common OI issues showed on your reading strawberry (unless one wants to count possible narrowing of the pulse pressure but most drs wont worry about that).

Id be curious what happened when that error reading occurred, something could of gone on very wacky then but the monitor may not have been good enough to get a reading then. Nearly all monitors error out on me (I tried 3-4 brands before I found one which cope with taking my readings), I had to get a very high quality one who can handle sudden weird heart beats and other sudden things to not suddenly error out.

Were you off your meds when you had this test done? you didnt over drink to compensate going to an appointment right before the test? (ive found that can prevent abnormality showing up on test if Im sculling lots of water before testing).

I suggest testing yourself at home for 10 mins sometime in the morning. Things like POTS etc can more easily show up in morning .

 

[Strawberry]

Did he say any more about it, like what indicated OI to him?
Was this a poor man's TTT or one done in a clinic or hospital. There isn't much data there. A doc would probably need more in order to prescribe for you. Could you ask Dr. K what type of OI he thinks you have? I'd guess you weren't on meds when this was done?

I can't remember what he said, except to increase my salt intake. And it was the poor mans TTT, done by myself.

Sometimes there will be a clinic at larger hospitals which focuses on dysautonomia, hypotension, syncope, and/or orthostatic intolerance. The clinic might have a variety of names though, or even be included as part of cardiology.

If you can find the clinic web pages for nearby hospitals, you can look to see if they have a relevant department, and if any of the specialists look like the sort of expert you need. Searching for "tilt" or "syncope" on the hospital's site can be easier than trying to figure out their label for the relevant clinic

This is perfect! thank you @Valentijn Hoping my Dr will at least know someone that deals with those.

looks like he diagnosed OI based on strawberry getting symptomatic to standing rather then one the readings being done. One doesnt have to have one of the well known OI disorders to get an OI diagnoses. None of the common OI issues showed on your reading strawberry (unless one wants to count possible narrowing of the pulse pressure but most drs wont worry about that).

Id be curious what happened when that error reading occurred, something could of gone on very wacky then but the monitor may not have been good enough to get a reading then. Nearly all monitors error out on me (I tried 3-4 brands before I found one which cope with taking my readings), I had to get a very high quality one who can handle sudden weird heart beats and other sudden things to not suddenly error out.

Were you off your meds when you had this test done? you didnt over drink to compensate going to an appointment right before the test? (ive found that can prevent abnormality showing up on test if Im sculling lots of water before testing).

I suggest testing yourself at home for 10 mins sometime in the morning. Things like POTS etc can more easily show up in morning .

I am not sure what happened during the error, I don't remember heart palpitations that morning. I had laid down the night before for an hour to see how long it took for my BP to hit baseline, and also trying to catch heart palpitations. I had no errors then, I just had a significantly lower HR when I successfully caught the palps.

I wasn't off my BP meds, and I probably had all ready taken my morning pills, so I would have drank at least half a litre of water. I will not be doing that test again, without a Dr standing next to me. That was pretty scary to see how poorly I really am when I stand.

looks like he diagnosed OI based on strawberry getting symptomatic to standing rather then one the readings being done. One doesnt have to have one of the well known OI disorders to get an OI diagnoses. None of the common OI issues showed on your reading strawberry (unless one wants to count possible narrowing of the pulse pressure but most drs wont worry about that).

That is very interesting. Do you think there could have been some other mechanism going on that caused the shaking and weakness? Also my legs ached for days after as if I had lifted weights.

 

[Valentijn]

That is very interesting. Do you think there could have been some other mechanism going on that caused the shaking and weakness? Also my legs ached for days after as if I had lifted weights.

I think it just means you need a real Tilt Table Test. The poor man's version has some inherent flaws which makes it difficult to see what's really going on, even when there obviously is an OI problem of some sort.

 

[Strawberry]

Does this look like the right Dr? It doesn't say he performs TTT, but what he diagnoses.

Specialties: • Cardiology
• Clinical Cardiac Electrophysiology
Board certified: Yes
Interests: • Atrial Fibrillation
• Cardiac Arrhythmia
• Cardiology
• Cardiovascular Diseases
• Cardiovascular MRI
• Catheter Ablation
• Defibrillator/Pacemaker F/U
• Heart Disease
• Heart Failure/Cardiac Failure
• Hyperlipidemia
• Hypertension (High Blood Pressure)
• Interventional Cardiology
• Left Ventricular Assist Device/LVAD
• Lipid Metabolism
• Nuclear Cardiology
• Pacemaker
• Peripheral Artery Disease
• Peripheral Vascular Disease
• Preventative Cardiology
• Pulmonary Hypertension
• Syncope
• Tachycardias

 

[voner]

@ strawberry,

an electrophysiologist should be familiar with tilt table testing.

I found it helpful to call the doctors office and asked to speak with someone knowledgeable who could tell you if they are familiar with diagnosing orthostatic intolerance, doing tilt table testing, etc. At times, some of the personnel I've talked to have been extremely helpful. At other times, I quickly learned that I don't want to take my business to that clinic or office.

 

[taniaaust1]

I will not be doing that test again, without a Dr standing next to me. That was pretty scary to see how poorly I really am when I stand.

https://en.wikipedia.org/wiki/Hypertensive_emergency I suggest you to check that out. You let your BP go into dangerous levels which can cause organ damage. Take care

Im sure it was due to my high BP spikes that I ended up being sent to the hospital over eye scans showing I had eye disc swelling (high BP is a common cause of that issue).

Unfortuantely the hospital doctor who didnt understand that my BP shifts quite dramatically and wouldnt believe that it goes high, hence hwen the swelling wasnt then showing on that day when he looked into my eyes (my BP was okay at time) so he dismissed the previous scan saying the scan must of been done with my head at the wrong angle giving a false impression of swelling (I know had my head set dead straight into the device used, the lady doing the scan had been very careful about positioning).

Eye disk swelling caused by high BP can lead to sudden permanent blindness!! So that is a worrisome finding on eye scan to have been just then left cause things were different on another day.

 

[taniaaust1]

That is very interesting. Do you think there could have been some other mechanism going on that caused the shaking and weakness? Also my legs ached for days after as if I had lifted weights.

It probably was low blood volume which caused the shaking and weakness on standing.

The legs though are harder to say, legs then aching for days could of been due to the excessive lactate acid buildup which happens in ME (and can happen just with standing) OR it could of been caused by what some POTS patients get with blood pooling in the legs, that can give achy legs (not sure if the affects of that though last for days).

 

[taniaaust1]

Does this look like the right Dr? It doesn't say he performs TTT, but what he diagnoses.

Specialties: • Cardiology
• Clinical Cardiac Electrophysiology
Board certified: Yes
Interests: • Atrial Fibrillation
• Cardiac Arrhythmia
• Cardiology
• Cardiovascular Diseases
• Cardiovascular MRI
• Catheter Ablation
• Defibrillator/Pacemaker F/U
• Heart Disease
• Heart Failure/Cardiac Failure
• Hyperlipidemia
• Hypertension (High Blood Pressure)
• Interventional Cardiology
• Left Ventricular Assist Device/LVAD
• Lipid Metabolism
• Nuclear Cardiology
• Pacemaker
• Peripheral Artery Disease
• Peripheral Vascular Disease
• Preventative Cardiology
• Pulmonary Hypertension
• Syncope
• Tachycardias

its hard to see from that if he deals with POTS and things like othrostatic hypertension or not. You could try ringing the hospital to try to find out if that hospital where he's out does tilt table testing. (in my state only one or two hospitals has a tilt table. A hospital with one should have someone familiar with these disorders)

 

[Valentijn]

@Strawberry - He doesn't look like he has much specific interest in OI. Syncope is an extreme form, and some doctors think it's the only relevant form. So he might not be interest in not being able to sit up, unless you're actually fainting.

 

[Sushi]

@Strawberry - He doesn't look like he has much specific interest in OI. Syncope is an extreme form, and some doctors think it's the only relevant form. So he might not be interest in not being able to sit up, unless you're actually fainting.

I think you'd have to try to contact him through his office--maybe a nurse?--to see if he does TTTs and has any real interest in OI. I see an electrophysiologist with a similar profile but she does treat POTS and is somewhat knowledgeable about dysautonomia in general. But this will vary a lot from doctor to doctor--even when they list syncope as something they treat.