Sarah Tee

What happened to Monash Neurology? Did it close? Does Dr Victor Gordon still see autonomic patients and do testing, and if so, through which organisation?

Just updating the link for this clinic: https://www.sah.org.au/syncope-clinic/

Here we go: https://www.washingtonpost.com/wp-dyn/content/article/2010/02/12/AR2010021204444.html This is an article about a teenager who experiences memory loss and is later diagnosed with POTS. Is this the kind of memory loss you are talking about?

Sorry, posted wrong link. Will search up correct one.

Good to see Dr Raj on board! Also, maybe this means sales will open to Canada soon. Edit: Just remembered that Dr Raj got a grant for a transcranial Doppler set-up last year. So he has presumably been measuring cerebral blood flow in his patients.

Okay, the group is back. Hope it stays this time. Nothing much there yet but hope to get some OCHOS and HYCH folk joining!

@little_blue_jay, I hope you are feeling a bit better. It sounds like you had a reasonably strenuous day – working, going to a busy market, standing at the ceremony, sudden loud noises, and walking home. Sometimes all these things can add up to feeling unwell later. I have found that any type of shock can make my blood flow fall, although I don’t get flares like people with POTS do. For example, the other day I was attending a hopsital outpatient appointment. I was actually feeling quite reasonable, when I suddenly found out that there was a wait of 1–3 hours that I had not been told about and wasn’t prepared for. The blood drained out of my face and I started feeling shaky and faint. It was not helped by the reception person at the clinic being snippy and unhelpful and me being on my own in the waiting room. So yes I do think a startling loud noise could put stress on your nervous system and lead to a POTS flare. Why POTS has flares arriving sometime after the precipitating situations, I don’t know. Maybe one day we will be able to measure ANS activity and see why.

One thing to consider is that you can have low blood flow to the brain with normal blood pressure and heart rate. However, I think you should look at your blood sugar. Dizziness can be from high or low blood sugar. There is a rise in blood sugar called the Dawn Phenomenon, for instance. (Not saying you have this of course, just pointing out the possibility.) Could you get a basic blood sugar meter and ask someone to check it for you first thing? Maybe your sister could stay overnight. The standard test for diabetes only looks at an average, I believe, so it might not capture fluctuations. Also, perhaps something has changed since you got tested last. You might want to try isolating which is making you feel better – is it sugar, salt, or fluids? – by trying each one separately. I’d try (on different days) plain water, oral rehydration salts, a sugary snack, and a salty snack. If it looks like the sugar is what is helping the dizziness, then you could ask your doctor about some testing and perhaps a loan of a continuous glucose monitor (CGM) for a couple of weeks to see exactly what is going on.

@MaineDoug, amazing that an adult doctor couldn’t deal with this sensibly in 30 seconds or less!

I’m not sure whether it is relevant or not, but the vagus nerve is involved in swallowing.

I hope that the new way of measuring blood volume is going to become available in the next couple of years. One company called Detalo Health has just had its device device certified in Europe. It just takes a small blood test, breathing in a tiny bit of gas, then another small blood test. About 15 minutes. Then the blood tests need to be analysed, which wouldn’t take long at a hospital lab. Then we can see when we need IV fluids. Edited to add: I suspect the new blood volume device will be used in this study in Canada: https://clinicaltrials.gov/study/NCT05924646?term=blood volume satish raj&rank=3 I know Dr Raj and a researcher from Vanderbilt University used the device in a previous study.

@Sea otter, your comment gave me a little giggle. I imagined you grabbing salmon from a river with your bare hands, or raiding a bee hive. Or, with your user name, maybe eating all the seafood off a sushi conveyor belt!

Yes, when I am symptomatic during the day I have no interest in eating. I don’t feel like I have nausea, but I have read that lack of appetite can be sort of a “pre-nausea” symptom. I find that food doesn’t taste all that great either. I make sure I eat anyway and choose bland things. My symptoms get better in the evening, and then I find that things taste good again. For instance, vegies, fruit or cheese that seemed bitter or unappetising at lunchtime look and taste good at dinner. The other factor is that low blood flow to the brain probably affects our appetite and taste buds.

@Sea otter, it’s so hard because we can’t come up with the perfect rebuttal for every wrong statement on the spot. For example, “You don’t need IV saline because you can drink”. “In my case, it’s not about drinking. Like many people with OI-type dysautonomia, I have a faulty RAAS that sets my blood volume artifically low. This can usually be ameliorated by oral rehydration salts and fludrocortisone, but when I’m in a flare the only thing that works to bypass the RAAS and normalise my heart rate is IV saline.” I find that when the person I’m dealing with is combative, unpleasant or a poor communicator my brain shuts down. So if the person said “I’m not clear on why your doctor ordered IV saline when you can drink. Can you clarify that for me?” I might be able to answer to “exam quality”. Or even just contacting the specialist. It’s like “If I don’t understand it, it must be wrong”, which is alarming. It should be “I don’t understand it so I’d better find out”. I have two appointments this week for a gynae/skin/autoimmune problem and am dreading them. The first specialist I saw was horrendous. So I’m trying two other options. Hope at least one goes okay. Have to drive to Capital City two days in a row. Ugh.

One day Emergency will have transcranial Doppler and carbon monoxide rebreathing, and many of us will be able to prove on the spot that we have low blood flow to the brain or hypovolemia. Though why we should have to, I don’t know! My rotten experience didn’t even really have any connection to dysautonomia – I was having an adverse drug reaction, which could happen to anyone with any medication. I suspect they treated me badly because they felt upset and insecure that they hadn’t heard of OCHOS or perhaps it was the usual disdain for disabled people and chronic illness. I wonder what would have happened if I had fudged the reason I was taking the medication as hypertension (not completely untrue) and said I was full-time employed as a marketing manager, had three kids and my lawyer hubbie was just parking the Beamer and would be in shortly … !

@Sea otter, oh no! You were well prepared but still couldn’t get any help. I’m gald you can get saline from your doctor sometimes at least. How are you doing now?

I could only suggest getting a letter from your specialist about your situation with their contact info on it, including an out-of-hours (locum service) number, and instructions on what to do. Or, alternatively, getting your doctor or specialist to call and fax the hospital with instructions before you go. That way they can at least recommend that you get a saline infusion. After a disastrous trip to Emergency with an adverse drug reaction, I now have a letter and an emergency contact number from my specialist, which I had to pry out of him. It’s all very well for doctors to say “Go to the hospital” but then they have to give you the appropriate support to do that. I actually remember doctors doing this for me ten and twenty years ago, but recently they don’t seem to bother. I have to be constantly asking and prompting them to do things, even older doctors who you would think would know better. Of course, with many of these things, you don’t realise until afterwards what was needed, and yet the doctors must have known and could easily have addressed it beforehand. I’m sorry you didn’t get any help. Is there anywhere you can get IV saline yourself, such as a medi-spa? (I know it’s expensive amd not available everywhere and the non-hospital environment can be a concern.)

@MikeO, that’s great to hear. I do slightly envy all your data points!

@MikeO, that must be very useful. Is the insulin helping?

@Jyoti, ah, sorry, my mistake. I know a little bit about wide pulse pressure but nothing about narrow. I wonder if you could get your lying and standing blood tests done again. I did find this discussion about what might be occurring in patients with CFS with orthostatic intolerance and narrow pulse pressure: https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02481-y It’s an interesting article, I think, but suffers from overuse of acronyms and abbreviations. You almost need to print them out so you can hold up the list and keep referring to it. Now that journals are published online, and there are no printing space constraints, I think they could ease back on them.

I got to wondering whether cerebral blood flow changes with head position in seated people normally. Found this study – bit obtuse so I wouldn’t recommend reading it – but basically the researchers didn’t find any differences in cerebral blood flow in healthy people seated with their heads upright, tilted forwards, or tilted back. https://physoc.onlinelibrary.wiley.com/doi/10.14814/phy2.15622 I thought maybe there was a change when looking down, and that normal people can absorb that and don’t notice it. But it looks like there isn’t. So if looking down is a factor for us, it must be to do with dysautonomia.

@Jyoti, were you saying that your top number went up and bottom number dropped? As in wide pulse pressure?

Note that you can save the survey at the end of a page and come back to it later via a link that will be emailed to you. So you don’t have to complete it all at once.

Unfortunately, the group seems to have disappeared. My dad’s Facebook account disappeared altogether for a day or so, then dribbled back, but some parts are mysteriously missing. I will re-do the group next week of it doesn’t reappear.

@MaineDoug, it is a lot to manage, isn’t it. I had an apoointment yesterday and it went okay, so I’m feeling a bit better about it all.