1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Tilt Table testing in Australia?

Discussion in 'ME/CFS Doctors' started by taniaaust1, Oct 10, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,873
    Likes:
    4,796
    Sth Australia
    Im needing for my POTS to be properly diagnosed as my currently doctor dont believe in POTS at all. Where in Australia can I have tilt table testing done???? etc I know I do have POTS but need proof for doctors.
  2. Nielk

    Nielk

    Messages:
    5,160
    Likes:
    4,875
    Queens, NY
    What - you're oin to tell me that they don't have tables that tilt in Australia? lol
    I don't know about Australia but here in the US it can be performed by cardiac units in hospital. I was supposed to get one done but chickened out from some stories I heard. But, if you need it for some qualifications, I would try cardiology department. Maybe someone who lives in Australia can give you better advice. The one thing that I found helped me with pots is support stockings!
  3. Nielk

    Nielk

    Messages:
    5,160
    Likes:
    4,875
    Queens, NY
    I think many people still didn't change their signature from the past charities to the 3 new ones. Anyone is very welcome to copy mine.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,957
    Likes:
    806
    Concord, NH
    Ah, your contest signature is not displayed. FYI

    GG
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,617
    Likes:
    5,439
    Albuquerque
    In the US anyway (and you would think also in Australia), any large hospital offers tilt table testing. The hospital I went to had it in the section for scans--CT, MRI etc. but that would vary.

    The trick is to get someone who knows how to give and interpret one for autonomic nervous system disorders. Cardiologists often miss the key clues.

    Sushi
  6. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,873
    Likes:
    4,796
    Sth Australia
    Ive seen two different cardiologists and neither had ever heard of POTS or tilt table testing and hence i didnt get anywhere there. Neither was willing to look into things and just did the normal heart tests.
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,873
    Likes:
    4,796
    Sth Australia
    Thanks Nielk for pointing out i still have old signature stuff which needs changing. Im finding it hard to think clear today so will try to remember to change it another day. (I cant remember right now where I need to go to to change it all etc, last time i had trouble doing it and ended up having to follow someones step by step instruction to guide me).
  8. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,873
    Likes:
    4,796
    Sth Australia
    What specialist in the hospital then do i need to ask to see to arrange to have it done? Ive asked about it from two different people at the hospital already. (hence why ive ended up thinking that it may not be done in the state of Sth Australia.. i keep running into brick walls.. NO ONE ive ever asked here has heard of that test).
  9. allyann

    allyann Senior Member

    Messages:
    247
    Likes:
    173
    Melbourne Australia
    A cardioligist would do tilt table tests. I have a name of a POTS specialist in Melbourne I've been recommended to that I could PM you. Not sure where in Aust you are.

    Allie

    Sent from my GT-I9100 using Tapatalk
  10. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    This is very interesting. I am certain I would fail this test as I have dizziness issues and my eyes cannot remain focussed on a moving object.
    But I know nothing about this. What does the test diagnose and what is the benefit of having it diagnosed? I mean if there is no accepted
    treatment for it (like a benefit in insurance coverage or something) then what good is it? Just wondered.
  11. ahimsa

    ahimsa Senior Member

    Messages:
    1,020
    Likes:
    857
    Oregon, USA
    The tilt table test is used to diagnose different types of Orthostatic Intolerance (OI). Just off the top of my head I can think of three main benefits:

    1. In my case a diagnosis of a type of OI (Neurally Mediated Hypotension) explained most of my symptoms. I had been describing what seemed to be a set of unrelated symptoms to my doctors for years. But because I never fainted (I got lots of pre-syncope symptoms) no one ever suspected that these symptoms were due to OI. It used to be that doctors only suspected OI problems if the patient fainted. Doctors now know (or they should know) that there are different types of OI and many ME/CFS patients who have OI do not faint (although, of course, some of them do faint).

    Knowing about this problem helped me to avoid situations that trigger NMH symptoms. It also led me to try various treatments (here's one list - http://www.dinet.org/what_helps.htm and here's another one - http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196 ) in order to manage the condition.

    2. The abnormal results from a tilt table test can be used as objective evidence for long term disability. In the USA that generally means social security disability benefits but may also mean privately purchased LTD or even ERISA LTD. I don't know what the long term disability situation is like in other countries.

    3. A third benefit, perhaps less tangible to many but still quite real, is validation. I had a wonderful husband who always believed in me. And my primary care physician had no idea what was wrong before the tilt table test but she did believe that I had a real illness. (I had "fired" a bunch of other doctors before I found her in 1994 and I'm still with her today). But still, just knowing that all those weird symptoms were connected, and could be measured and documented, was helpful.

    I can only imagine how much more helpful an abnormal test result is when all your family, and even your doctors, think that "you're oversensitive" or "you're imagining things" or "you could do it if only you'd try harder." I read these kind of stories on forums like this all the time - it's heartbreaking. Any validation is helpful in these horrible situations.

    I'm unsure why you think there's no accepted treatment but perhaps I misunderstood you? There are lots of possible treatments but, like most chronic illness, there's no guarantee that what works for one patient will work for another. Some patients have a lot of trouble finding anything, whether it be prescription drug or supplements, that helps them manage their OI symptoms. I'm lucky in that I have found a few prescriptions that help me (not a cure, but a help). All my prescriptions are covered by my Medicare drug Part D coverage (part of a supplemental Medicare plan).

    rydra_wong, for a general overview of Orthostatic Intolerance here's a short web page - http://www.cfids.org/about-cfids/orthostatic-intolerance.asp

    For a longer description try the Johns Hopkins document here - http://www.cfids.org/webinar/cfsinfo2010.pdf

    There's lots of information out there on the web but these are good places to start.

    I have heard that some doctors are willing to give a tentative diagnosis of Orthostatic Intolerance without the tilt table test if the patient has lots of symptoms that match up with that diagnosis. Then they work with patients and have them try different treatments to see whether they help. The only problem with this approach is that if the treatment(s) fail then it's not as clear whether the diagnosis was wrong or whether patient didn't respond to those particular treatments. But it is cheaper and easier for the patient if they can avoid a tilt table test because it's certainly no fun. (it took me a week to recover from my first test)

    Edited - PS to taniaaust1, I hope you find a clinic or hospital that will do your tilt table test for you. You said the cardiologists you saw had never heard of POTS. Have you tried showing them the document from Johns Hopkins? It might not work but at least it's worth a shot.
  12. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    Thanks, Marjorie-with-the-Marjarum-Avatar. I have had dizziness issues for years (forever?) but only just started to realise it in my 40's when I was periodically so dizzy I almost couuld not walk w/o falling over (luckily in evenings mostly). I actually bashed the side view mirror off my car and my family laughed that I was so clumsy but it was not clumsiness so much as dizziness. I had thought it was due to some kind of silent migraine and then even transient ischemic incident. I became aware that if I tried to focus on a moving object it would make me dizzy. Thing is I have avoided doing anything that would require me to focus on a moving object lifelong (team sports -- I'm ok with stuff like swimming, but can't see a flying baseball). I stopped walking my dogs when I got two who would not behave off a leash (and walking on a leash jerked my head too much so it made me dizzy but I was not aware that was why I did not like it) and I could not STAND those exercise bikes which make you move your arms (moves the head). My worst nightmare is to wake up in the middle of a science lab and not know what is going on. Labs involve motion -- DOING something. My father and I did better with sit down jobs. I can't work in 3-d, it makes me dizzy. But all this is minimized because I think I've had it all my life and my eyes subconsciously don't try to focus when my head is moving...so it reduces the dizziness. The class I am taking right now is a new sort of nightmare -- it is Visual Studio - the instructor whips the cursor all around and before my eyes can focus on what he's selected he's many selections away! Shudder! I dunno - I never considered orthostatic hypotension. In fact, I never really bothered about it except to think it was an odd thing about me I'd learned to work around. Until in my 40's when it got worse in the evenings sometimes. I started to worry I might fall and really weird people out.
  13. ahimsa

    ahimsa Senior Member

    Messages:
    1,020
    Likes:
    857
    Oregon, USA
    So sorry to hear about your problems with dizziness! It must be difficult.

    There are many different causes for dizziness but it is a common symptom of Orthostatic Intolerance. However, I believe that patients with OI mostly have trouble with dizziness caused by too much standing still, or sitting still, not caused by moving around. And I think most folks (I know I do!) have lots of other OI symptoms, not just dizziness. I get nausea, brain fog, increased heart rate, short of breath, heat sensitivity, etc. Having trouble with showers (combines heat with standing) is very common. This is all related to the body's inability to maintain heart rate and blood pressure in an upright posture.

    I think that there may be a bit of confusion between Orthostatic Intolerance and Orthostatic Hypotension. I know that doctors use different terms but I think Orthostatic Hypotension generally means the more common problem of a drop in blood pressure that happens immediately after a change in posture, e.g., if a patient stands up quickly they get dizzy or see stars. It can be diagnosed easily in a doctor's office by taking the blood pressure while sitting and then standing. A tilt table test is not needed to diagnose this problem.

    It's more difficult to diagnose patients who have Orthostatic Intolerance. Here's an extract from the Johns Hopkins document (full document here - http://www.cfids.org/webinar/cfsinfo2010.pdf) about diagnosis of NMH (Neurally Mediated Hypotension, aka Neurocardiogenic Syncope) and POTS (Postural Orthostatic Tachycardia Syndrome):

  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,873
    Likes:
    4,796
    Sth Australia
    Yes I did take in with me the info from the Johns Hopkins. One said they didnt have time to read it and my own normal doctor I've also tried to get him to read it.. he said "that isnt Australian so that info dont count for here" (or something along those lines).
  15. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,873
    Likes:
    4,796
    Sth Australia
    At this point Im so desperate (even the SA CFS society didnt know of any I could go to for that except one who is overseas till next year) Im willing to fly interstate to be tested elsewhere.

    Do you mind posting his name here or pming me it. (If you are thinking of Dr Lewis.. Ive already tried looking up his info and read online he wasnt taking new patients).

    The POTS is majorly affecting my life and on Friday after I got taken out to do shopping, I had to be brought home before I even could do it all as I collapsed on the ground and couldnt get back up. The POTS is my worst ME symptom right now (that and my extremely bad insomnia).
  16. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,873
    Likes:
    4,796
    Sth Australia
    POTS is one ME symptom which for some can be quite treatable. There are many differrent treatments for it which can be tried. (I'd be willing to do the saline IVs for it if I had to.. actually Im thinking about sometime doing that anyway possibly without a doctors help). Does anyone know if saline IV bags and the tubing can be just gotten throu a chemist without a doctors letter? (ive got needles with tubing on them at home which probably would plug in if I knew how to get the rest).

    With the eyes.. POTS can cause blurry vision but what you described to me (I could be wrong) seems like another kind of dizziness issue rather then POTS when you say it just causes you to be unable to follow moving objects with your eyes.
    The other eye issue POTS gives me is blindness.. I can go completely blind (I see just black) before a POTS blackout.

    I used to get dizziness and brain symptoms when I tried to follow moving objects, but in my case that wasnt due to POTS but rather due to brain overload/over stimulation (where it just couldnt handle seeing movement). When I had that symptom.. I also did have falling over too but the falling was different to my POTS falling eg I'd fall turning a corner eg triggered by a poor balance issue .. rather then with my POTS its triggered by standing or heat (POTS has certain POTS triggers which usually trigger an attack of it or worsen it).

    With the other kind of fall I'd wobble about first.. with my POTS when I fall.. I tend to go straight down eg my legs can just buckle on me or fall due to more like black out almost happen in my POTS attacks. (A POTS trigger isnt usually turning a corner..but rather the standing and being on ones feet itself).

    The POTS also for me happens with other symptoms too.. Thou this dont happen for all, for me it often comes in with a symptom complex eg nausea, dizziness, clumsiness, headache, brain fog, weakness often all happen during a POTS attack.

    Anyway.. the dizziness you described with the info you gave, I thought sounded more like the dizziness I used to get when I also had proprioception, kinesthesia issues rather then the POTS. To test for that kind of balance issue.. a Romberg's test can be done. http://en.wikipedia.org/wiki/Romberg's_test I think you probably find you test postive to this.
    (dont try it unless someone is there ready to grab you and make sure you have nothing about you which you can hurt yourself on if you go down hard and fast. I had two neurologists ready to catch me but miss catching me and I went down fast and hard).

    I used to get constant dizziness which turned out to be due to my neck (a chiropractor fixed the "constant" dizziness)...
  17. Fred1234567

    Fred1234567

    Messages:
    44
    Likes:
    20
    Hi I hope you are better than when you wrote this. i have POTS and am in Australia no tilt testing for me but I did get an ECG done in my GP's office 1/ lying down and a second standing up the first was normal the second showed tachycardia and that was after 1 litre of IV saline.

    Maybe a willing Dr- an ECG lying One standing, 1 litre IV saline an other ECG standing- would get some proof. It is easy but expensive to get saline at an Integrative/Alternative Health Clinic maybe you could get them to do the ECG's as well and take that to a standard GP...

    GP's can do IV saline they just may not be willing to...it is a nightmare chasing and finding one that will ...can someone else do that part for you.

    Like you I wondered about doing IV salines myself...how hard can it be. Actually having seen an after hours doctor struggle, use 4 needles and leave me with huge brasses not too easy. Also it is hard to buy the needles. Good luck. If we can get oxygen and saline into the next version of the Primer we may have more ammunition!!!

See more popular forum discussions.

Share This Page