Sarah Tee

@Sea otter, @Caterpilly Funnily enough, there is a machine that can induce blood pooling in the lower body (and hence low blood supply to the brain). I can’t remember what it it is called – negative pressure something? It looks like a smaller version of an iron lung. The research subject is sealed into a cylinder with the seal at about waist level, then a pump lowers the pressure inside the cylinder, and the lower pressure sort of “sucks” the legs outwards in every direction, making lots of blood flow down to the lower body. I imagine NASA or one of the air forces of the world invented it to investigate G force stresses on pilots. I saw it described in a lecture by Dr Grubb, I think. One of the dysautonomia experts, anyway. He described it as interesting to experience and very unpleasant! Edited to add: It’s called a lower body negative pressure chamber. Here’s a photo of an experimental subject in one: Just found out this technology can also be used for healing purposes by boosting circulation to the legs.

@MikeO, yes, they tried to select POTS patients who had autoimmune features. There was supposed to be a big trial of IV albumin for POTS in Canada, but unfortunately it was cancelled. You are right, this one won’t lead to anyone getting albumin or IVIg, but it paves the way for bigger studies. I believe they call it a pilot study. Gotta start somewhere – this is the first proper trial of IVIg for POTS, and in a way it is also the first proper trial of IV albumin for POTS even though it was supposed to be the placebo. Now the researchers can say to funding bodies: ”We got these interesting results. Can we have some more money to take it further?”

Found a link to the prepress version (PDF): https://assets.researchsquare.com/files/rs-3500596/v1_covered_47c0c14e-56a5-4023-b431-ada86da3f063.pdf?c=1698995976 I have had a quick read. They didn’t quite get the results they expected from the IVIg group, but they seem to have learned a lot and paved the way for further study. Yay!

Results are out for the first proper randomised controlled trial of IVIg for POTS! https://pubmed.ncbi.nlm.nih.gov/38311655/ When I read about this trial, which has IVIg as the active drug and IV albumin as the placebo, I *said* that they might find that everyone felt better because albumin also has immunomodulatory properties. And that is possibly what they found. Hire me as your assistant, Dr Vernino! 🙂 (The other possibility is that albumin boosted blood volume with a longer “sticking time” than saline. Or maybe it boosted blood volume and had an immune modulating effect as well.) Albumin has its risks, like any blood product, but it is waaaaaay cheaper than IVIg. Specialists in Canada have been using it for severe treatment refractory POTS patients for years: https://www.cbc.ca/news/canada/saskatchewan/katherine-kay-diagnosis-genetic-testing-1.4260019 (I do wish those Canadian specialists would publish some case studies at the very least.)

I suspect from the wording that The Alfred in Melbourne also has transcranial Doppler: https://www.alfredhealth.org.au/services/non-coronary-intervention-clinic https://www.alfredhealth.org.au/services/vascular-laboratory Again, they are not specifically using it for dysautonomia, so your specialist will need to either word things carefully (so as not to scare them off) or be persuasive and convince them that they can do it.

I was wondering whether anyone in Australia has seen Dr Yusuke Sata, either at The Alfred, where he seems to work with Dr Murray Esler (!), or privately. https://www.alfredhealth.org.au/services/hypertension-clinic https://cvs.net.au/specialists/cardiologists/vic/item/dr-yusuke-sata

@CJ65, as someone who speaks a little Japanese, may I point out that it is “takotsubo”. It refers to the shape of a fishing pot, which the researcher who characterised the condition thought the change to the heart resembled. When learning Japanese, I found that mistaking even one syllable, like “su” instead of “tsu”, inevitably led to me accidentally saying something rude!

@MikeO, I’m glad you are getting on well with your specialist now. I’ve started the new medication, a different class of vasodilator, so am hoping it will be a success.

@MaineDoug, I will keep an eye on the GI side of things. I’m sorry you didn’t find out until recently and hope your new medication is working.

@MikeO, I remember reading your troubles with the faint clinic. I could do with a beer too! My dad contacted the specialist and eventually sorted it out. Took up the whole day, mind you. I can’t continue with the new calcium channel blocker due to the sleep disruption, but am trying an ACE inhibitor instead. I have to resign myself to the fact that no matter what I do, this specialist will trip me up in new and unexpected ways every time we interact because of his terrible communication skills. All I can do is deal with it after it happens. Thee is no-one else to see anywhere nearby so I just have to put up with him!

@MaineDoug, I will try to keep a close eye out for it. Now that HCQ is helping my mild joint pain, I hope to stay on it permanently, even if it doesn’t end up doing anything for my dysautonomia (providing there are no adverse effects). I don’t think anyone has ordered me Sjogren’s antibody tests. I could get it done myself.

Had the specific tests for hydroxychloroquine baseline. All fine. Some of the tests were surprisingly tiring. A visual field test to check peripheral vision with tiny spots of light and pressing a button was very hard as I kept “seeing stars”. It was a warm day, I had had to stop one of my OCHOS medications, and I think my blood flow was low. Then there was one to check the retina with strobing red light and a little red cross to look at. I began to get motion sickness, unusual for me, and had to stop the test. Not keen to vomit with my head stuck halfway into some expensive plastic-coated optometry machine! So I had to stop that test early, but luckily the optometrist had enough data. Felt vomitous (family word) all the way home and am wrecked this evening. Have to go back for standard eye exam and Schirmer’s test at a later date. No rush so will wait till cooler weather.

Off for my special eye test tomorrow. I haven’t had an eye test of any kind since primary school. Will also get Schirmer’s test if there is time. I don’t think I have dry eyes now, but I want it done as a baseline in case I end up with Sjogren’s syndrome (which I strongly suspect my mum had). I also need a standard eye test. I’m approaching 50 so it seems sensible.

@MaineDoug, I’m sorry your hands are so bad. Do you think they will improve when you can get back on biologics?

@Pistol, people seem to think there is a quick fix for every medical problem these days. I think in the past society was more accepting of chronic illness. When you read books from Victorian times, there’s almost always a character such as an invalid aunt, or someone with migraines lying in a darkened room. And these characters aren’t made out to be lazy or a burden on their families. So many had TB, polio or war injuries, and people seemed to understand that. (Not that things were better than now, but maybe they were more accepting of illness.) Plus, so many people don’t know how to just listen and be sympathetic, rather than rattling off ill-thought-through and unsolicited advice. I hope you get back to your “normal” soon.

After getting completely exhausted by the trip to Neighbouring Regional Town to see my specialist, and having to do all the talking because he speaks so poorly that my support person cannot hear a word he is saying, I was unable to muster the energy for a shower for six days. But tonight I did it! I did still change my PJs, wash my face and clean my teeth every day. Hair remains unwashed but I don’t care. Birds can nest in it and keep me company if it’s that bad!

This post from an Aussie blogger might be helpful: https://chronicallysiobhan.wordpress.com/2017/12/02/under-pressure-compression-garments-pots/ It’s from 2017, but, at a quick glance, seems to still be relevant. I think she also did a post about the woes of trying to get into the highest-level compression ones. 🙂 Waves from central Victoria!

And charged me for it!

Ugh, it gets worse. I just found out that he faxed a prescription for melatonin to my pharmacy without checking with me first. I have tried melatonin previously, and it made me horribly nauseous.

Also, I just checked some of his online information and he promotes himself as being able to assess and help manage “Sleep disturbance/insomnia”. Pfft.

Just letting off some steam. My specialist keeps having discussions with me about particular medications, leading me to assume that he can prescribe them, but then, after multiple discussions, he will suddenly reveal that he cannot prescribe that medication, and act like I am weird for asking about it. For example, at the last two appointments we discussed using sleeping tablets to temporarily deal with the insomnia side effects of calcium channel blockers. I raised it two appointments ago, and we agreed it wasn’t ideal to “pile drugs on” in this way. Then I failed to tolerate another class of vasodilators. So we decided to to try calcium channel blockers again (a different one with different pharmacokinetics). This time *he* brought up the possibility of using sleeping tablets if needed, and seemed to have reconsidered it in the light of my dwindling options. So I try the new calcium channel blocker, feel better, but get insomnia after a week, and contact him to ask about sleeping tablets. ”I don’t prescribe sleeping tablets or any potentially addictive medications.” Well why didn’t you blimmin’ say so? Where did you think I was going to get them from? No GP is going to prescribe sleeping tablets to deal with side effects from a medication prescribed by a specialist, especially when the patient has something unusual such as dysautonomia. If I had known he couldn’t prescribe sleeping tablets to potentially get me over the hump of insomnia with a calcium channel blocker, I would have gone to a different medication this month. Also now my sleep pattern is disrupted and I have no way of getting back on track. This is not the first time he has done this either. He led me down the garden path about octreotide as well (luckily it turns out octreotide wouldn’t work for me, but at the time I didn’t know it and was extremely disappointed). I should have learned from this that I have to interrogate him about everything he says, I suppose. Or develop mind-reading powers! Short version: I have wasted my money, the government’s money (subsidy), a bottle of pills, and two weeks of my time because my specialist cannot communicate the most basic of information, like the fact that he can’t prescribe sleeping tablets, even though we discussed it twice.

@MaineDoug, I’m so sorry to hear that. Going out for tests or appointments is so exhausting.

@JennKay, I’m sorry to hear that. I’m “lucky” in that my symptoms are all daytime, so I can sleep reasonably well. However, I do find sleep unrefreshing, and generally feel like h*ll when I wake up. I recently read that researchers have discovered marked daily patterns in blood samples taken from patients with rheumatoid arthritis. The researchers speculated that other immune-related conditions may also have a daily cycle of inflammatory markers or “bad antibodies” that cause symptoms to follow a daily pattern.

I wonder if this lecture might have some useful info: https://vimeo.com/272750685 It is looking at POTS, but the info might apply to other types of dysautonomia as well. ”Dr. Mitch Miglis and Dr. Fiona Barwick from Stanford University presented on sleep disorders in POTS during the May 2018 Dysautonomia International Webinar.” I’m afraid it’s been a while since I watched it, and I can’t remember whether it touches on nighttime respiration rates.

@MaineDoug, that is great news!