How safe (or not) is tilt table testing in severe ME/CFS?

[Amy]

Hi,

Does anyone know whether Tilt Table tests are recommended/safe for people with severe ME/CFS?

My GP thinks I have POTS. I have severe ME and am bed bound, and am trying to weigh up whether to try getting transported to hospital for a tilt table test. Obviously I can't get a proper diagnosis or prescription drugs for treatment without undergoing a test. I've heard (but can't remember where) that tilt table tests can cause severe relapse in some people. At the moment it's difficult for me to sit up for more than a few minutes, and I relapse badly traveling even very short distances. But POTS symptoms have lowered my functional level considerably so I'm desperate for treatment.

Any information or experience with this, especially from/about the more severely affected, would be very welcome.

Thanks,

Amy

 

[taniaaust1]

Hi Amy.. i myself have had very severe POTS (standing still for 15-30 seconds.. used to be enough to make me completely collapse onto ground). Ive been unconscious up to 5 mins at a time due to POTS. Fortunately this has improved so my POTS isnt THAT bad now.

I was never in your shoes thou of thinking about having a POTS test while my ME was very severe. But what i do know when it comes to severe POTS, is that it is said that it is possible for tilt table testing to actually stop ones heart.. hence why resusitation equipment should be on hand. Dont let that scare you thou as medical people will be near by watching you when you have that test.. to take quick action if needed.

I've heard that they stop the test if one is about to faint but i know from my own experiences, I can faint extremely fast without being aware that im about to. It is not abnormal after a bad attack of POTS, to feel not good for a couple of days. (so any extra unwellness.. may not necessarily be due to just the ME itself, but rather from recovering from the POTS episode too. My own opinion on this as far as im concerned, is that it is easier to recover from a POTS crash then a ME crash).

It sounds like something you are going to have to go throu.. unless a doctor can come to your home and take your heart rate on just getting out of bed and standing for a while to diagnose it (poor mans test). Knowing one has POTS and treating that.. can make a big difference in many of the ME symptoms.

I think that the POTS testing in your case on that tilt table is going to happen quite fast as it may be a case of getting table upright and then nearly immediately stopping the test. (my chiropractor had a tilt table and raised it on me once before i had time to warn not to.. I instantly collapsed to floor in faint. I lasted less then 2-3 seconds upright).

Im a bit concerned about you having to go to hospital to have this done.. and the crash that travel may do.. but i cant see how you can do much about it. (maybe try to get transported to hospital laying). I also suggest to see if you can arrange that if they do find you do have POTS, see if you can have a saline infusion done at the hospital on the spot before leaving. (this may possibly help stop a crash and could be all arranged before you even go to the hospital). Ive heard saline infusion may make a big difference.

 

[alex3619]

Hi Amy, taniaaust1 is right: tilt table tests can stop the heart. I know, because it happened to me. It should always be done by a cardiologist at a major treatment centre, preferably a hospital. However, the problem with the heart is well understood by cardiologists, and the heart can be really easily restarted. This is only potentially life threatening: in practice I suspect that many patients have their heart stopped and are routinely revived without incident. It is often as simple as reversing the tilt table, putting the feet above the head: blood flows to the brain, the heart function is then restored. If in doubt, I suggest discussing these concerns with your cardiologist. If you are not using a cardiologist, I would get a referral to one and not do this at a minor clinic with a general practitioner.

Bye
Alex

 

[Sasha]

However, the problem with the heart is well understood by cardiologists, and the heart can be really easily restarted. This is only potentially life threatening: in practice I suspect that many patients have their heart stopped and are routinely revived without incident. It is often as simple as reversing the tilt table, putting the feet above the head: blood flows to the brain, the heart function is then restored.

Wow, that's amazing! Is there no damage to the heart? I thought I had read somewhere years ago that you couldn't keep shocking people's hearts with defibrillators without damage (though I realise you're not talking about defibrillators here). Though I may have been watching some movie where someone said that and it is rubbish! No idea where I got the idea from.

Amy, I'm sorry to hear your problems are so severe - I was also bedbound for many years so I know what that's like. I wonder if your GP could discuss your difficulty in coping with the trip to the hospital and probably with the tilt table test with the hospital specialist? If your POTS symptoms are obvious and severe they might agree the test is not necessary and agree for your GP to administer a test at home (with you just standing up for a bit). That said, the NHS tend to be a bit rigid on that sort of thing but it might be worth asking!

 

[silicon]

Hi Amy,

I hope that you can somehow be permitted to substitute some other test instead of the tilt test. It saddens me that this test may be a requirement for you to get the medical validation you need. I’m not very knowledgeable about POTS, but I would hope that some sort of case could be made based on measuring blood pressure and/or heart rate after standing from a prone position. I’ve never had a tilt test, and probably have only very minor POTS and am relatively high-functioning generally, but I personally view a tilt test as a form of assault that in my own case I would strenuously try to avoid.

 

[glenp]

I much prefer "the poor man's test" where your bp and hr is measured at different times by hand not on a tilt table. Its a good idea to have your own and keep a record that you can give to your doctor

glen

 

[Amy]

Hi everyone,

Thanks to you all for your replies. Sorry I haven't been able to write as my eyes and hands are bad at the moment. I've been thinking about it, and yes, I think it would be best if I could be diagnosed just by standing for a short time. I only have to stand for a minute or two for the blood pooling to be visible and my heart rate to rocket. I've heard from someone who's seen Prof Julia Newton in Newcastle (who's done research on POTS and OI in ME/CFS) and apparently she doesn't subject ME patients to the tilt table, but gets them to stand for a couple of minutes. I also read in a book I have called Severe ME/CFS: A Guide to Living, by Emily Collingridge, that "it is not suitable to use a tilt table for diagnostic purposes in severe ME as this can result in a dramatic deterioration in health".

I've been in this situation where my GP first wrote to the cardiologist 2 years ago, and he's been refusing to do a home visit, and we've been going round in circles ever since. He does private work but still won't do a home visit privately. This week (since I posted) I finally got a phonecall from a specialist cardiology nurse at the hospital who gave me advice about non-drug ways to manage POTS, and said that it order to get medication they would need to see me to diagnose me properly (of course). I need to ask whether my GP observing my heart rate etc would be sufficient for them, if they won't come to me at home. My GP does visit me at home. We have discussed a hospital admission to get a diagnosis, but I'm so noise sensitive etc that being in hospital is hell, and also makes me a lot worse. Hmmm. Will talk to my GP again.

Thanks again for your comments and advice

 

[Sasha]

I'm sorry your cardiologist has been so inflexible, Amy. Although it's always worth asking, the only NHS service I've ever managed to get to do a home visit is the physio service. Why the NHS thinks that it's OK to leave the sickest patients to rot at home I've really no idea. People who are too sick to get to a hospital ought to be the priority for diagnosis and treatment. Shame on them.

 

[ahimsa]

I don't have an answer regarding safety of the tilt table test. I do have pointers to information on Orthostatic Intolerance (which includes testing information) that might be helpful.

Recent webinar (video) on Managing Orthostatic Intolerance - http://www.youtube.com/watch?v=5iF30TVLaRE

Slides of the presentation - http://www.cfids.org/webinar/slides-090110.pdf

Written material that goes along with the presentation (PDF file) - http://www.cfids.org/webinar/cfsinfo2010.pdf

Note that measuring standing heart rate for 10 minutes might be helpful to screen POTS patients but would not help in identifying patients with NMH. Here's an extract from that last PDF file that I listed above:

How are NMH and POTS diagnosed?

NMH and POTS cannot be detected with routine, resting blood pressure or heart rate
screening. The diagnoses can be made with a prolonged standing test or a tilt table test. Although
a 10-minute test is all that is needed to diagnose POTS, this is too brief for diagnosing NMH,
which usually requires at least a 45-minute period of upright posture. Many hospitals and
academic centers throughout the world perform tilt table testing. It allows careful measurement
of the heart rate and blood pressure responses to the head-up position, usually at a 70-degree
angle, in an almost standing position. The usual reason for performing a tilt table test in the past
had been for the evaluation of recurrent fainting. Many people with NMH develop adaptations to
keep from fainting, such as crossing their legs, fidgeting, or sitting or lying down when they get
lightheaded or tired. However, during the tilt table test they must remain still, and they cannot
call upon these natural defenses. As a result, fainting can occur for the first time during the tilt
table test. Increased fatigue and malaise often occur for a few days after the test is performed,
although our experience has suggested that these symptoms can be minimized if the individual is
treated with intravenous saline solutions immediately after completion of the tilt test.

Also, a test may not be necessary for all patients. Some patients have symptoms that match up so completely with a diagnosis of orthostatic intolerance (POTS or NMH) that the doctor can prescribe treatment on a trial basis (especially if that treatment has not got many side effects) without needing to do a test. It all depends on the doctor, of course. For example, if you don't have high supine blood pressure, you could try increasing your salt and water intake to see whether that helps. Or elevate the head of your bed, or rest in a recliner (head slightly above the feet), instead of lying completely flat in bed.

I hope this is helpful!

 

[Cloud]

Hi,

Does anyone know whether Tilt Table tests are recommended/safe for people with severe ME/CFS?

My GP thinks I have POTS. I have severe ME and am bed bound, and am trying to weigh up whether to try getting transported to hospital for a tilt table test. Obviously I can't get a proper diagnosis or prescription drugs for treatment without undergoing a test. I've heard (but can't remember where) that tilt table tests can cause severe relapse in some people. At the moment it's difficult for me to sit up for more than a few minutes, and I relapse badly traveling even very short distances. But POTS symptoms have lowered my functional level considerably so I'm desperate for treatment.

Any information or experience with this, especially from/about the more severely affected, would be very welcome.

Thanks,

Amy

So sorry your at that level of illness Amy. My OI is mild now, but I have spent plenty of time where your at. I have never done the tilt test, but obviously it's much safer than transfering yourself alone because with the tilt test your strapped to a table and can't fall when you get faint. You also have all the medical personel and equipment right there with you. Maybe they will even give you a few liters of saline at the end which should curb some of the crash symptoms. As far as causing relapse.....I don't see how it could be anymore an issue with that than transferring yourself at home.....although they will rotate the table several times. As you said, it's for diagnostics. I think if you need this documented proof of NMH and/or POTS for any reason such as getting treatment or for disability insurance, I would go for it. But your right to want feedback from those with more experience on this. It sure seems that a doc who is willing to do this test, would know all the risks for you as well. You have a valid concern.

 

[ukxmrv]

I've only been able to have the "poor mans" version of the tilt table test. That is a doctor has taken my blood pressure when I lie down, sit up and stand up. On another appointment with a different doctor I had a holter type monitor on and then my heart readings were taken lying and sitting up and then standing. All were abnormal.

My concern would also be the problem of getting to a clinic, then any reactions to the TT table.

 

[Amy]

Hi. Thanks everyone. Yes, a major concern in my case is just the travelling etc rather than the tilt table alone.

My GP visited me today. Unfortunately her blood pressure monitor broke whilst I was standing up, but she measured my pulse and it was very high - dramatically increased on standing. I also started shaking badly and she could see blood pooling in my hands and feet. I only managed to stand for a couple of minutes.

My GP feels that it would be a bad idea for me to attempt to get to the hospital at the moment, and is going to phone the cardiology dept and discuss the situation further, and give them her measurements (I guess she will have to come back to do blood pressure). So I will have to wait and see a bit longer.

My GP is very disappointed with the local ME/CFS service. They don't have the resources to do home visits anyway, but when she tried to speak to them about POTS, they had never heard of it, despite there being a link between the two conditions, and despite the fact that up the road from them there's a cardiology dept of a major teaching hospital where the link between ME/CFS and POTS is recognised. Ho hum.

 

[Hope123]

One thought would be to get a automatic home blood pressure monitor (just push a button) and do your own testing but record the results to give to your doctor. Here in the US, blood pressure monitors are easily obtained and not overly expensive (the high end ones cost $80 but adequate ones cost $30); some of them are not very accurate so you should ask your doctors which brands they suggest and then have a relative bring the device in to your doc's office and have them test it against their monitors to make sure it is reasonably good. Amazon sells them online.

If you have symptoms on sitting, you could probably just give results on sitting. The point is that sitting up, your body has to fight gravity to maintain blood pressure also; standing is a greater stress than sitting. Sit upright and have someone record every 30 secs -minute or so your symptoms, heart rate, blood pressure. Stop if you start feeling very bad. Orthostatic intolerance can be diagnosed by heart rate (increase beat more than 30 beats per minute within a certain time period).

There's a video just this month I haven't seen but is about POTS/NMH in CFS by a world-renowned expert on this that you could share with your GP: http://www.youtube.com/watch?v=5iF30TVLaRE

The treatment for this include non-med and med meaures. I am fortunate to have a CFS specialist as one of my docs. The starting treatment for me was to increase my salt intake to 2-4 grams of salt a day [usual US recs are 2g a day] and continue to drink lots of fluids like I already do. Don't do this if you already have high blood pressure or other conditions - check with your doc first. If you do something like this or even take meds, you can then use the home blood pressure monitor to check if the treatment is working for you (i.e. no or less changes in heart rate/ blood pressure/ symptoms on sit/ stand).

 

[Sushi]

I have had a tilt table test and it was a very hard test for me. The doctor who prescribed it and read it has POTS himself, so he had his patients tested as "gently" as possible--i.e. he told us that if we started to have severe symptoms to stop the test and NOT to take it all the way to a faint.

Still, it was hard enough that I do not want to repeat it. It took me a couple hours to recover enough to drive home. (I had to go to the hospital by myself). It also took about a week afterwards to get over the effects of the test as it really stresses the ANS.

After the initial test my doc always did the "poor man's TTT" in his office at each appointment. While the whole test (which can take a couple of hours) gives very good info about the functioning of the ANS, the "poor man's" gives a good guide as to where you are with OI on any individual day.

Best wishes,
Sushi

 

[ukxmrv]

Amy,

You hit the nail on the head there. For severely affected or housebound patients the NHS offers very little. Even if you could get to your local "ME Clinic", you may find that they offer no help for physical symptoms and no testing would be done there. It's a postcode lottery.

It means that most people with ME don't get treatment for symptoms or even a name for some of them. The NICE Guidelines have a lot to answer for.

 

[Cloud]

I've had one of the electronic digital monitors for several years....it's great for taking BP (Blood Pressure) and Pulse while needing to change positions as we do with Ortho's (laying-sitting-standing). I've used that thing 100's of times and it still works great. Paid about $40.00 for it like 10 years ago. It's really difficult to take ones own BP using a stethoscope and manual monitor so one of these works great, especially if your alone.

I used to see 40 point changes in my systolic BP and pulse when changing positions. Systolic would drop 40 and pulse would rise by at least 40. Standing in one place could cause Pulse increase by as much as 100 over baseline (~160) and irregular. So, it was important to have a monitor with this condition.

 

[taniaaust1]

Im so glad to hear that you have a decent doctor.

In England they do not want POTS to be part of CFS.. hence why they use such stupid guidelines there. In Canada.. having POTS can be part of the CFS diagnostic guidelines.

 

[Amy]

To my absolute delight, the cardiologist and specialist nurse have agreed to visit me to assess me at home on the NHS. Can't quite believe my luck!

 

[Cloud]

To my absolute delight, the cardiologist and specialist nurse have agreed to visit me to assess me at home on the NHS. Can't quite believe my luck!

Awesome News! Glad to see something good happening for you. Here's to good things continuing....

 

[Sallysblooms]

That's good news.

My doctor treats my POTS with supplements. In my case I have high bp most of the time with it. Some people have low bp. The autonomic nervous system does not work right at ALL with POTS. The nerves are usually affected, not helping the blood vessels get the blood up to the brain. Neurotransmitters are also affected. Most reg. doctors give one prescription and tell you to eat salt.

POTS is terrible. I am slowly improving. I hope your doctor is helpful to you and you heal.