negative tilt table anyone??

[SpecialK82]

I have had orthostatic intolerance for a couple years but have yet been able to prove it on a tilt table test. I have had two tests and both are negative. Does anyone else have this problem? I'm trying to prove it for my disability case. My CFS doctor said it is obvious that my HPA is unbalanced and that it just may not be happening all the time.

Does anyone know of any other tests that I could have performed at a doctor's office that would show autonomic dysfunction of any kind?

 

[jimells]

Hi specialK. After fussing at the doctors for 2 1/2 years, I finally had a tilt table test a few weeks ago. Like you, the result was 'normal', which means there is yet another test 'proving' that I am not sick, just a lazy welfare bum.

I don't know what tests might show autonomic disorder. I guess I need them too, if there are any. No doctors seem to know anything about any of this stuff anywhere in the state of Maine.

I'm not looking forward to seeing the PCP in two weeks; I have no idea if she will suggest more tests or just tell me there's nothing she can do, since I won't consent to more PSA testing or a colonoscopy.

Yes, *that* PSA test, the one that has a false positive rate of 80% and is the 'gateway' test to horribly painful prostate biopsies, damaging surgery, and the end of sex. No thanks.

In spite of the research showing how bad the test is, the doctors have been trying to convince me for five years that my fatigue is from prostate cancer, based solely on the PSA test and the symptom of fatigue (my 'plumbing' works fine, unlike the rest of my body). It's like the drunk looking for his car keys only under the street lamp, because that's where the light is.

The irony is that in spite of my supposed cancer, I've already outlived two local doctors who died from cancer before I had a chance to see them. One appointment was cancelled the day before my scheduled exam. The other doc closed up shop before I could get an appointment.

Because the doctors here know nothing about ME/CFS and POTS, they prefer to test for something that might kill me in the future, instead of diagnosing and treating an illness that is wrecking my life today.

 

[Sushi]

I have had orthostatic intolerance for a couple years but have yet been able to prove it on a tilt table test. I have had two tests and both are negative. Does anyone else have this problem? .../QUOTE]

Hi SpecialK,

How were your TTT's performed? If the ordering doctor is not knowledgeable about how to do it you can get a false negative. I had an autonomic specialist do it and there were at least 2 periods of tilt--one about 20 minutes, then I was put flat and about 5 other autonomic tests were done--I remember a grip test, a blowing test, reading something into a taperecorder with the distraction of hearing another recording, etc. Then I was tilted again and they would have kept me up for at least 45 minutes, but my BP and heart rate went so wacky after about 30 that I asked to stop the test--they already had plenty of data for a positive test.I also had an electrocardiogram going the whole time.

A doctor can also do the "poor man's TTT" in his/her office. You are either sitting or lying for at least half an hour, your BP & pulse are measured, you stand and they take the vitals again every minute for about 5 minutes.

Hope this helps. I think a lot of people get negative TTT results just cause they don't keep you up long enough and don't do all the various tests. NMH often takes over 20 minutes to show up. POTS seems to take less time.

Best wishes,
Sushi

 

[DLWit]

I have been trying to identify what has been ailing me as well. I have had symptoms my whole life, but no one has been able to help me. My father had fainting issues which the docs had him have heart surgery, which ended up killing him. During the heart surgery episode, one of the docs mentioned NMH, so I went home and looked it up. My jaw fell through the floor as I read it! It described everything I had been going thru for the last 30 years! wow!
What I read said to use a lot of salt and water which I have been doing since then, but still it is not enough.
I use meditation which helps, but in certain situations I could explode, it's very weird.
I had my mother add salt back into their diets and my father improved some, but it was very difficult to tell after the heart surgery episode. but, back to me.
I am a controls engineer, which I am recently beginning to understand may have been a poor choice in regards to what my body could handle because of the amount of concentration required and stress.
During the early years of my career I was blessed or cursed as it may be with extraordinary opportunities which challenged my creative and technical abilities, but in retrospect may have irritated or created situations where I would collapse from physical ailments like headaches, backaches that would leave me bed ridden.
I had some wonderful years with the same company developing processes that stretched my imagination and completely wasted me. They finally got rid of me as a nuisance employee in the end.
I floundered during a poor economy from taking contract positions and side work that made me travel and work extremely hard, which has a bit of an impact on your health.
I finally found work locally with a smaller firm that pushes me, but I have been able to manage using all of the techniques I have developed over the years without any help from my local doc.
When I turned 50 I seemed to develop allergies which I treated with pseudophed products which made me feel much better. I have been using this for 8 years now, but felt I was getting some of the side effects.
So, I decided to try and become drug free! cool, this can't be hard! hahahahah
I made it about a month before the pain becomes unbearable and I went back the pseudophed and I am feeling better.
I suppose the pseudophed is raising my heart rate enough to keep my blood from pooling, but I need more during high stress times?
I still have difficulty standing for long periods no matter when or where, especially when it is very hot and humid.
I guess I am looking for some guidance of what doctor has experience with this condition around philly area?
I have not been diagnosed yet, my doctor does not want to really help me with this, and my insurance does not want to cover some of the tests required. Right now pseudophed manufacturers are getting a ton of my money! lol
Any experienced voice would be appreciated

 

[Sushi]

Sudafed was one of the earliest drugs used by autonomic specialists. I believe it is a vasoconstrictor, which would be one reason it helps with NMH, but, of course, it doesn't get to the causes.

Licorice extract is another thing that works for many.

Caffeine is also a vasoconstrictor, if you can handle it. Compression garments (there are some very comfortable cotton knee socks I use if I am going to be on my feet) are also a help. Also abdominal binders which are not so comfortable but also help as blood pools there.

There are tests to diagnose autonomic disorders but there are very few autonomic specialists--so they might be hard to get.

Best wishes,
Sushi

 

[Hope123]

I have had orthostatic intolerance for a couple years but have yet been able to prove it on a tilt table test. I have had two tests and both are negative. Does anyone else have this problem? .../QUOTE]

Hi SpecialK,

How were your TTT's performed? If the ordering doctor is not knowledgeable about how to do it you can get a false negative. I had an autonomic specialist do it and there were at least 2 periods of tilt--one about 20 minutes, then I was put flat and about 5 other autonomic tests were done--I remember a grip test, a blowing test, reading something into a taperecorder with the distraction of hearing another recording, etc. Then I was tilted again and they would have kept me up for at least 45 minutes, but my BP and heart rate went so wacky after about 30 that I asked to stop the test--they already had plenty of data for a positive test.I also had an electrocardiogram going the whole time.

A doctor can also do the "poor man's TTT" in his/her office. You are either sitting or lying for at least half an hour, your BP & pulse are measured, you stand and they take the vitals again every minute for about 5 minutes.

Hope this helps. I think a lot of people get negative TTT results just cause they don't keep you up long enough and don't do all the various tests. NMH often takes over 20 minutes to show up. POTS seems to take less time.

Best wishes,
Sushi

Yes, get someone knowledgeable about the procedure of doing a tilt table test. Aside from time, you can void the results of a test if one consciously stands at attention or fidgets during the test and doesn't "relax" into the table.

Also, some ME/CFS specialists do not think that the "poor man's tilt table" test is adequate to identify cases of OI/NMH/POTS in people with CFS; it may pick up the most severe cases but not less severe cases.

 

[Kati]

Here is what can go wrong when a professional not knowldgeable performs a TTT:

1) Using the wrong equipment:
You need a device that measures the beat-to-beat heart rate. It looks like a BP cuff that is applied to one finger
The tilt table needs to move you from horizontal to about 70 degrees vertical. You should not be doing the moving. It is not supposed to feel good.
You should have an EKG and BP machine on at all time.

2) Not being left on tilt long enough
Most neurologists/ cardiologist don't know that pts with ME have a delayed response (to exercise and to tilt) and tends to test only for 10 minutes which is not sufficient. Dr Klimas went over it with me. In written, for the local autonomic dr to read. if I remember well, Dr Klimas does them for 30 minutes (unless you faint or have a major adverse effect or she has recorded evidence of POTS or NMH, then it's much shorter)

3) Responses to the TTT (chest pain, feeling faint,etc) should be recorded and monitors should be observed for autonomic response.

i hope it helps.

 

[SpecialK82]

Thanks guys for all your replies. I have had both TTT's performed at Hunter-Hopkins, Dr. Lapp's office, so they are used to CFS there. It's weird because in the morning when I was meeting with Dr. Lapp, he said he could see that I had a problem when he took my pressure lying down, sitting and then standing.

After the long exam in the morning, we went out for lunch (saltly Mexican) and then I came back and did the TTT. I keep wondering if somehow eating affected it - maybe the salt??

It is truly one of my most disabling symptoms so it's very frustrating not to prove it. Sushi, can I ask where yours was performed? I'm intrigued by the 5 autonomic tests that you did in between, it sounds like a very thorough procedure.

Kati - I don't think I had the monitor on my finger but cannot remember for sure.....

DLWit - I see it's your first post - Welcome to the Forums, there is a wealth of information on this site, you are in good hands. I had no idea that Sudafed can be used for NMH. It makes sense though. I think if you've found something that helps you, keep going with it. Of course, I don't know if there are any long-term side effects from it, but anything beats the hell of not being able to stand up for long. I might give that a try myself....

And like Sushi said, caffeine. I gave that up about 5 years ago because of this illness, but I bought my favorite drink, Diet Coke, this weekend, and I'm going to give it a try. What a treat!

jimells - so sorry that you are going through this rough patch. I know many of the CFS doctors have a tilt table and also Vanderbilt Autonomic Dysfunction Center in North Carolina http://www.mc.vanderbilt.edu/root/vumc.php?site=adc

I called Vaderbilt to see if they could do any other tests besides the TTT and they do not.

 

[Kati]

Salty mexican food, and hydration could have done it.

Perhaps you could get retested When you are in relapse, say after an exercise test (Stevens protocol), which is another way to prove you are not fit for work. Dr Klimas does a cognitive test before and after exercise as well which is another extra that helps proving disability.

I feel for you, having to prove disability in order to get benefits and $ to pay rent and groceries. Have been there, done that. They will likely request more documents down the road.

By the way, was it Natelson who was looking for research subject willing to give cerebro-spinal fluid sample and also performed neuro-imaging? this could be of help to you, and cost only travel fees.

 

[Sushi]

.... Sushi, can I ask where yours was performed? I'm intrigued by the 5 autonomic tests that you did in between, it sounds like a very thorough procedure.

I know many of the CFS doctors have a tilt table and also Vanderbilt Autonomic Dysfunction Center in North Carolina http://www.mc.vanderbilt.edu/root/vumc.php?site=adc

I called Vaderbilt to see if they could do any other tests besides the TTT and they do not.

My test was done at West Florida Hospital in Pensacola, but it is not the hospital that matters it is how the doctor ordering the test requests that it be done. Mine was done by an autonomic specialist who himself has POTS, so knows the TTT from the inside out.

Footnote: Vanderbilt is in Nashville, TN. They used to do other autonomic tests, who knows.

Hmm, maybe the salt effects things. How long did they "keep you up?"

Sushi

 

[taniaaust1]

I had a so called autonomic specialist only do a 10 min standing test of me
Interestingly she didnt seem to know much about POTS at all only a few very basic things... she seemed to be more familiar with things like pure autonomic failure which she checked and ruled out.. its the opposite of my orthostatic BP issue (which drinking all that water also stopped from occuring in that 10mins) which she didnt think is possible at all but which Dr David Bell talks about in in some of us.

As my autonomic issues are quite severe (heart rate going up to 136 on standing and with an increase of 67 beats at times or a pulse going up to 170/138) with them showing up usually between 1-10mins just on a poor mans test before I NEED to sit or I'll faint. I thought it would all be picked up that day and wondered why it didnt.

I then came across http://www.hopkinsarrhythmias.com/patient/diag/tilt_prep.htm which explained to me why on this occassion I wasnt positive on a poor mans test. It says that one should not eat or drink anything for SIX hours before the test. I'd drank 3 Litres of water just in the 2 hours before the test just so I'd be okay to get there....so I realise now that that actually stopped a positive test for me from showing up.

There are also as far as I know, no actual offical way of doing a tilt table with places all doing things a bit differently. For one of the best ways of doing the test so the link above.

 

[Sushi]

I then came across http://www.hopkinsarrhythmias.com/patient/diag/tilt_prep.htm which explained to me why on this occassion I wasnt positive on a poor mans test. It says that one should not eat or drink anything for SIX hours before the test.

Forgot that part, but yes, I had to fast for 6 hours before the hospital TTT. One of the reasons they gave was so you wouldn't throw up, but of course it makes autonomic dysfunction more pronounced if you are dehydrated.

Sushi

 

[Chris]

I know that Heart Rate Variability is a common test for autonomic dysfunction, but sadly can't remember just how it is tested for (typical...alas). Chris

 

[ramakentesh]

I believe Dr Julian Stewart's team haev found cases of abnormal orthostatic cerebral autoregulation that appear independent of both heart rate and blood pressure fluctuations. It might be an idea to contact them?