Sarah Tee

@Tree63, did you see this discussion on Reddit? I know it won’t help convince your GP, but it might be helpful anyway.

@Tree63, is this what you were after? https://n.neurology.org/content/82/10_Supplement/P1.034 Forgive me if I am telling you something you already know, but just keep in mind that this shows a correlation between low ferritin and POTS. It doesn’t show causation. To show that, the reasearchers would need to take a group of patients with POTS and low ferritin, give half of them iron to raise thier levels above 50, give half placebo, and then see whether the patients who got the iron supplement/infusion had a) reduced symptoms and b) higher iron levels at the end of the experiement. You could also email Dysautonomia International and ask whether there has been a conference lecture covering this topic. The lectures are published on Vimeo, but the topics aren’t very easy to search. https://vimeo.com/dysautonomia

@Pistol, it is good to know the residents were on board. What’s that saying about scientific progress – a new theory will be accepted when the old generation of scientists die out. Sad, because it doesn’t have to be that way.

@RecipeForDisaster, that’s interesting, I hadn’t heard of galantamine. Is it for the acetylcholine angle? I’m sorry it didn’t work for you. Insomnia is the last thing any of us need as a side effect. The other day I was reviewing all the medications I have tried. I mused, “I think midodrine was my favourite”. My dad said, “But midodrine didn’t work, did it?” And I said, “No, it didn’t work, but it had the least side effects”. 🙂 I hope some very clever and dedicated PhD students are out there devoting themselves to understanding and reducing side effects in medications so we can benefit from their work.

@Pistol, haha, I wonder, how do you pronounce that? I imagine a horse neighing indignantly and ending on a hiccup!

OCHOS is orthostatic cerebral hypoperfusion syndrome. https://pubmed.ncbi.nlm.nih.gov/26909037/ Sorry, I should have included a link when I mentioned it.

@rondo, I’m glad to hear that you encountered someone who was a good listener and also had knowledge of autonomic problems. I have read articles and heard in lectures from multiple doctors that dysautonomia is not really covered in general medical training. The autonomic nervous system doesn’t really fit anywhere in the curriculum – bowels, nerves, eyesight, veins, brain, heart, skin? – so it isn’t covered anywhere. And, in the US, I was told it is only covered in an obscure elective unit in neurology training. The doctors who know about it seem to gain their knowledge through contact with a mentor, often by chance rather than them seeking this out as a career path. A small number are inspired to educate themselves after encountering a patient with dysautonomia, or even having a family member diagnosed. It sounds bizarre, but it’s basically word of mouth! Anyway, better get off my soapbox 🙂

@rondo, I have orthostatic intolerance with normal heart rate and blood pressure. Specialists have been diagnosing chronic orthostatic intolerance for quite a while without checking cerebral blood flow. I have seen two autonomic specialists here in Australia who had no problem making the diagnosis, so I have my fingers crossed that your specialist will be helpful. It is not weird at all to want to be diagnosed with something. After all, you have already been living with the symptoms. You are not wishing anything bad on yourself, just looking for a name and an explanation (of sorts). In terms of treatment, as far as I can tell from peering at extracts from his textbook, Dr Novak hasn’t yet found a specific treatment for low cerebral blood flow. You and your specialist will be trying the same selection of interventions as someone diagnosed with HYCH, for instance. You know, it is funny you posted because I was just thinking “Boo hoo, my diagnosis doesn’t even have a name”. I would have to call it chronic orthostatic intolerance, with normal BP and HR, caused by autonomic dysfunction.

Here is a Wayback Machine link for the Vanderbilt webpage quote from near the start of this thread: https://web.archive.org/web/20110210002836/http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788

I just found an interesting article on dyspnea: https://zero.sci-hub.se/6795/ca38eda48867d74df915e0a4e4e222e1/epstein1995.pdf?download=true PDF link (Not specific to dysautonomia) It explains why it is hard to quantify and investigate. It states that, in patients with cardiovascular disease, hypoxia and dyspnea did not have a clear relationship, i.e. hypoxia did not always cause dyspnea and fixing hypoxia did not always reduce dyspnea. It’s an older article, 1995, so maybe they know more now. I have heard several POTS experts say that the cause of dyspnea in POTS is unknown (recent lectures).

@chimeraskeep, that is interesting. If I lived in the US, he would be the specialist I would try to see. (I have plain OI, no HR or BP abnormalities, and he seems to be the only person who publishes on “my kind”, although I am sure all the specialists know we exist. I might have HYCH or OCHOS, the two new syndromes he named, but I’ve been told they can’t be tested for in Australia.)

If anyone here contributes to Wikipedia, autonomic testing for cerebral blood flow velocity could be added to the entry for transcranial Doppler (with a suitable footnote or two). I used to contribute bits and bobs a long time ago, but I don’t any more.

For those that haven’t had any success with volume expanding measures (oral intake, medications, IV saline), I just wanted to mention a “last resort” option to consider, which is IV albumin. If you search “albumin” on this forum you’ll find various posts, including some recent ones from me. (I’m no expert – others here have much more experience with it, some over many years.) There’s almost nothing published on it, unfortunately, but my post has links to what is out there.

Answering my question: According to this webpage, a capnometer does measure end tidal CO2. And a capnograph records data over time and displays it graphically. https://infiniummedical.com/what-is-capnography/

Here is the segment on “Operation Ouch” (from 2 min mark approx.): This shows a capnometer, which may or may not be what they use to measure “end tidal CO2”. Does anyone know? By the way, this is an excellent show. It is funny and corny and also very educational. I have learnt a lot watching it. I recommend it for all ages. Not sure about accessing it in various countries. In the UK, you can see it on the BBC. In Australia, you can see it on the ABC. Other countries may only be able to see the clips that are on YouTube. https://www.youtube.com/@OperationOuch

Looks like there are about 140,000 medical residents in the US. https://www.aamc.org/news-insights/america-s-medical-residents-numbers-0 36 in 140,000 … But they will make a big difference to the people they treat if they can spot autonomic problems and make the right referrals. And one day they will be teaching and mentoring residents themselves. Fingers crossed that they are already spotting us 🙂

Found a different use in investigating pediatric syncope (Canadian study): https://publications.aap.org/pediatrics/article-abstract/104/2/237/62438/Cerebral-Blood-Flow-Velocity-During-Tilt-Table?redirectedFrom=fulltext

@Pistol, I suspect I have lowered cerebral blood flow too. Not sure about the end tidal CO2/hypocapnia part. Do they always go together? I have asked and so far no luck locating testing in Australia (haven’t asked that many specialists yet). I wonder if hospitals might have the Doppler gadget but haven’t thought to use it in autonomic testing. If I remember right, end tidal CO2 meters are fairly common in intensive care units, so perhaps many hospitals would already have them. I actually saw a handheld one being used to illustrate how oxygen/CO2 work in breathing on “Operation Ouch”, a BBC medical education program for children. The cost isn’t high for the Doppler headset, you are right. I forgot to mention the bonus that Dr Novak will be mentoring the grant recipients. Maybe the grant was aimed at bringing attention to those who have “plain old OI” just as much as getting more of these gadgets out there. (Not that they won’t be useful.)

https://americanautonomicsociety.org/2023/03/01/groundbreaking-course-makes-strides-in-advancing-autonomic-medicine/ Thirty six residents from various disciplines and from across the US attended a four-day training course in January 2023. The residents learned about diagnosing and treating autonomic disorders and undertook to share their new knowledge by conducting training at their home institutions and schools. The course director is Dr Glen Cook. This was the first time this “mini-fellowhip” course was held.

I was hoping the grants would go a bit further afield than the US and Canada. Maybe next year they will be offered again. I will encourage specialists here in Australia to apply. (The grants were open to applicants in any country.)

Just watching research grant information from last year and thought it might be of interest which researchers/institutions received grants for transcranial Doppler equipment to use during TTT. (Several researchers have looked at cerebral blood flow velocity in dysautonomia patients. Dr Peter Novak published an article naming HYCH OCHOS as a new OI syndrome diagnosable with this technology.) Here are the recipients: Tae Chung, Johns Hopkins – has an interest in exercise rehabilitation https://vimeo.com/483090164 Melissa Cortez, University of Utah – has an interest in headache and migraine https://vimeo.com/359102751 Nate Robbins, Dartmouth Hitchcock – neurologist https://www.dartmouth-hitchcock.org/findaprovider/provider/2145/Nathaniel-M-Robbins Satish Raj, University of Calgary – cardiologist with lots of POTS research under his belt, frequent speaker at DI conferences https://vimeo.com/589514511 So if you see one of these doctors, or attend one of these institutions, you may be able to have your cerebral blood flow checked soon. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6157889/ https://www.brighamandwomensfaulkner.org/about-bwfh/news/expanded-autonomic-testing-helps-to-pinpoint-cases-of-orthostatic-intolerance https://pubmed.ncbi.nlm.nih.gov/26427910/ Is there any particular treatment outcome? Dr. Novak has some medication suggestions in his textbook, “Autonomic Testing”, which your specialist may have. Nothing definite but might be something you haven’t tried yet. Otherwise, treatment is along the same lines as other OI syndromes. Update: I missed the following paragraph in one of Dr Novak’s papers: “This syndrome [OCHOS] may result from abnormal cerebral vasoconstriction or abnormal venous pooling in the upright position. Our approach to therapy is the use of calcium channel blockers or angiotensin-converting enzyme blockers for patients with hypertension or prehypertension; and volume expansion with salt, fluids, fludrocortisone, or the use of pressor medications in patients with low blood pressure.” So, for one OCHOS group – those with hypertension – calcium channel blockers may help reduce the abnormal constriction of arteries to the head and brain. For the other OCHOS group – those with low blood volume, poor venous return, low blood pressure – the usual OI and pressor medications would be tried.

I also found this interesting thread on a forum for people with lung conditions: https://healthunlocked.com/asthmalunguk-lung/posts/136277778/poor-circulation-affecting-finger-pulse-oximeter-readings I wonder whether the earlobe monitors would work for us, given that “hot ears” is a common problem. I get incorrect readings at the hospital with ear thermometers because my ears get hot when I wear a face mask. But I know many people get hot, flushed ears at random times. Would that affect oximeter readings on the earlobe?

@Catbrat, good to hear you found something to help with your nausea. I hope the medication from your specialist helps too.

It took me two weeks to recover! I am now trying a small dose of 12.5mg at breakfast. When I first got symptoms 18 years ago, it was after breakfast. (Used to be for only half an hour each day … it got worse year on year until now, when I am symptomatic until about midnight each day.)

Dr Nick Gall touches on this in terms of poor circulation to the extremities in this Q&A. It has terrible lighting, but the audio is all that matters. He sounds a little annoyed by it – this is when a lot of people bought finger tip oximeters and he and his colleagues were suddenly overwhelmed with people contacting them about low readings. (He is a lovely chap so please don’t hold this against him, it was just a frustrating situation to be in at the time.) I’m sorry but I don’t have the concentration to find the time stamp for this topic. It is after the 15 minute mark. Given that the symptoms of low blood oxygen are similar to some dysautonomia symptoms, it is a difficult one. I found this info on the Raynaud’s Association website that may be of interest: https://www.raynauds.org/2020/02/15/winter-2020-member-tips/ I wonder if that would work in general for people with poor circulation to the hands?