Sarah Tee

@Lob, POTS can be caused by any infection, and really any illness, so it’s possible. I searched for research papers linking POTS and herpes zoster, but nothing came up, so no particular association between these two has been found. POTS and other types of dysautonomia can also appear without any identifiable trigger, so it can be hard to know, but there is lots of anecdotal evidence of people coming down with a virus and getting POTS soon after. Unfortunately, this aspect of dysautonomia isn’t well studied yet. There has been evidence building recently that the immune system is involved, but nothing really affecting treatment options yet.

@Macca, I know this is an old post, but do you happen to remember the name of the psychologist who you saw back then? I have been trying and trying to find someone who can help with chronic illness with no luck.

Very spiffy! I must get one of these soon.

@MikeO, haha, you read my mind! I did investigate but it didn’t look promising for various reasons. We are taking one more shot at my specialist next appt to get him to pull himself together and order the test. If he doesn’t come through, I will try a neurologist locally and Dr Spies. Maybe I can make my specialist write to her!

This is an FYI post only. Hoping it might help other Aussies trying to track this down. Note that as of November 2023, I don't have any evidence that any of these locations have performed testing for orthostatic intolerance disorders. But I believe that they all could with very little or even no fuss. Instructions, which are apparently fairly standard, can be found in Dr Peter Novak's research papers. In lieu of a tilt table test, patients can do an active stand test or similar while wearing the TCD headset. Note that it will be up to your specialist to write a persuasive order or contact the service. "Investigation of cerebrovascular disturbance" seems to be a good phrase to use. (I am attempting to get testing at the Austin in Melbourne and will report back if I am successful.) Public: The Austin Hospital, Melbourne https://www.austin.org.au/diagnosing-brain-spinal-cord-nerve-muscle-disorders/for-patients/ https://www.austin.org.au/diagnosing-brain-spinal-cord-nerve-muscle-disorders/for-health-professionals/ https://www.austin.org.au/Assets/Files/Neurodiagnostics request form.pdf The Neurological Intervention and Imaging Service of Western Australia (NIISWA) http://niiswa.com/pi_tcd.html https://www.scgh.health.wa.gov.au/Our-Services/Service-directory/NIISWA Private: Sydney Adventist Hospital has one specialist who mentions TCD in his bio, presumably because he can order it at the hospital for his patients: https://www.sah.org.au/peterpuhl The website only mentions vascular testing, but TCD is sometimes considered a type of vascular scan, just that the arteries are in your neck and head. https://www.sah.org.au/ultrasound/ St Vincent's Clinic, Sydney https://www.stvincentsclinic.com.au/find-a-doctor/specialties/vascular-laboratory A private clinic, Sharpe Cardiology in Queensland, uses TCD to detect a particular heart problem. Maybe if your specialist is nearby and very persuasive, they can create an arrangement for it to be used to measure orthostatic changes. Long shot, of course. https://www.sharpecardiology.com.au/post/screening-for-a-pfo (Not sure of location - connected to Gold Coast Private Hospital.) Another private clinic on the Gold Coast using TCD to detect a heart problem. Again, maybe your specialist can persuade them to do an orthostatic test. Another long shot. https://heartbrainclinic.com.au/post/how-do-i-know-if-i-have-a-pfo/ A private imaging company at the Gold Coast (may not have transcranial Doppler but worth a shot): https://mermaidbeachradiology.com.au/ultrasound-gold-coast/ This one does vascular Doppler and has locations in NSW and QLD, although I’m not sure whether they do transcranial: https://www.qscan.com.au/patient-services/ultrasound/vascular-ultrasound/ Other: This specialist in South Australia, Dr Michelle McDonnell, has done studies on TCD so can perhaps help you to find out where and how to get one in South Australia: https://www.thephysioclinic.com.au/2018/12/michelles-story/

I also found a bunch of articles from the 90s with Dr Novak, Dr Low (presumably the Low who cowrote the paper with Schondorf naming POTS?) and Dr Judith Spies, an Aussie who was interning in the US and who now runs an autonomic lab in Sydney. This makes me even more angry that my autonomic specialist, who was not even born when all this was going on, but still knows next to nothing about TCD, did not know there was one in a hospital in the city he lives and works in, and has shown no interest in ordering it for his patients. https://pubmed.ncbi.nlm.nih.gov/?term=novak low doppler&sort=pubdate&sort_order=asc

Just adding an article on the history of TCD. It was invented way back in the 70s and 80s, when various doctors started experimenting with trying to measure the arteries to and in the brain. https://journals.sagepub.com/doi/full/10.1177/1544316720976210 Note that this article doesn’t mention its use in dysautonomia. But it may be of interest anyway. Lots of graphics showing how they aim at the arteries through the skull. Not easy. I did find an article from Japanese researchers using it to investigate postural dizziness in 1979. Wow! (Article title was the only bit that got translated.) https://pubmed.ncbi.nlm.nih.gov/508434/ I have noticed a fair bit of research on autonomic and specifically orthostatic intolerance problems comes from Japan, Korea and China. I wonder if they are ahead in everyday diagnosis and treatment as well.

From 2020. https://www.heartrhythmcasereports.com/article/S2214-0271(20)30241-4/fulltext

We all know it, but it’s handy to have it summarised: https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/35689118/ (NB: The authors refer to “orthostatic syncope”, but include conditions that don’t necessarily involve syncope, such as POTS. So I think they actually meant “orthostatic intolerance and syncope conditions”.)

Oh dear, sometimes they can’t really hear what they are saying, can they.

@MikeO, I’m glad your test went smoothly. Hope the antibiotics help.

I hope you find out about the low BP someday. Do you think it might be related low blood volume? There is a new device for measuring blood volume. Maybe Dr Novak will buy one. I believe they are “only” about $US50,000, plus you need a phlebotomist, a blood gas analyser (in most hospitals already), a laptop, and the occasional cylinder of carbon monoxide. It’s been approved in Europe as a medical device so perhaps it will show up soon in the US. It’s very cool that you are one of the people in the original study 🙂

Thanks for the extra info, folks. Someone who purchases one in the US will be bound to go on holiday overseas and find out whether it still works, I guess. Although that may not be the same as someone from Europe buying one in the US and having a European phone service provider and trying to sign into the app once they got home. For example, maybe the app would be blocked from the European Apple Store (or wherever people get apps these days). If it were a stand-alone device (no app needed), like a blood pressure monitor, people would be able to use them overseas. Like supposing it had a basic information read-out that showed on the base station, or a unit like CGMs have that you wear on your belt or something and then download the info to your computer or phone. Oh well, another company or Stat Health itself may make something like that one day. It’s all very interedting and exciting. I think that measuring cerebral blood flow is going to be BIG in the next few years. It’s apparently gaining in popularity in intensive care settings.

Oops, I meant to say “poor you” as well (not in a condescending way). I hope this new research has given him some ideas to better treat HYCH and that that will help you. Am I right in thinking HYCH is fairly uncommon? In his first paper on it, I think Dr Novak only mentioned 16 patients, whereas for OCHOS he had about 100. And maybe you are one of those original 16? Edit: In the paper I linked to, he has data from 72 HYCH patients. Based on what he said in a lecture, I estimate he has about 130 OCHOS patients now.

Oh no, poor person in Hawaii! Hope your visit goes well and the traffic isn’t too bad.

@RecipeForDisaster, if you have the time and inclination, you can tell him that you know someone in Australia (me!) who is tentatively diagnosed with OCHOS and that his research is helping me after 18 years of illness. I hope your appt goes well. Do you live near Boston, or is it a long trek for you?

@GasconAlex, that’s all very interesting. I’m in Australia, and getting a basic govt pension/allowance isn’t too hard. Your doctors can write letters and fill in forms saying you need it because you can’t work. Quick asset check and it is okayed. But if you want to apply beyond that to have funded help, like funding to pay someone to clean your house, or drive you to appointments, you have to apply to the National Disability Insurance Scheme (NDIS), which from what I’ve heard is torturous.

https://n.neurology.org/content/100/17_Supplement_2/3757 Also wanted to add that Dr Novak is about to release a study on cerebral hypoperfusion in EDS. Not really a spoiler: he found a lot of people have it, even those without POTS. (He mentioned this EDS research in his talk at the Dys Int conference. Sadly the audio is awful, so the talk may never be released. They just gave me special access to it because I subscribed and asked. Very sad because almost nobody else talks about cerebral hypoperfusion specifically. Except Dr Rowe sometimes, but he only looks at it in CFS, which is very worthy but not helpful to me.)

@albertspa, I’m guessing it’s because the product would have to be registered in other countries before the company could sell it there. Even though it is registered as a health device rather than a medical device, the registration is still required and each country would have different requirements. This would take time and money, and the potential sales in the other countries might not justify that expense right now. Having said that, I am desperate to have one and wish it was a worldwide release. I am trialling medications to reverse the abnormal vasoconstriction to my brain at the moment and it is so hard to know whether they are working or not because of all the side effects and other stuff going on.

@MaineDoug, I’m so sorry to you are having to deal with hearing loss on top of everything else. Can they do anything for it?

I lost a small amount of weight! I have come up with a small rotation of simple meals and snacks. Plus summer is here and there are early summer fruit and salad items that take little preparation. In a couple of weeks I’ll be able to get a basil plant and maybe a tomato bush to pop on the verandah.

@Pistol, I’m so sorry you had those injuries. Thank you for the detailed description. It does sound tiring.

On a related topic, I just remembered I was sent my medical records a while ago, on paper and on a CD. And the files on the CD appear to be editable! This means I can cut all the wrong/irrelevant stuff out. Woo hoo! I am just about to start with a new GP – hope springs eternal. @MikeO, when/how do you see the referral letters? I am trying to work out how to intercept them in future.

I have found a few older posts on this topic, which were helpful as always with the DINET archive. Any recent experiences? I may find a medication that works long before I get the neuropsych appointment, but I thought I might get it happening anyway. (I figure it would be handy to have on file in case I need disability accommodations or to apply for govt help in the future.)

Has anyone had this happen, and, if so, how did you resolve it?