Sarah Tee

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.

Hmm, perhaps I was too hasty. If you read it as “a type of dysautonomia characterised by postural tachycardia”, that makes more sense. But I don’t think people read it like that, doctors or laypeople. I think they read it as tachycardia causing or at least leading the syndrome, and think that fixing the tachycardia will fix POTS. And then, confusingly, some people feel better when their tachycardia is controlled and some don’t. Syndromes!

Video update report: The survey link: https://redcap.vanderbilt.edu/surveys/?s=9rB9NkqMrC The original publication from the survey: https://onlinelibrary.wiley.com/doi/10.1111/joim.12895

I feel awful if I look down at something and concentrate. Before I realised this, I would find myself in tears at my sewing machine after trying to make a buttonhole. Edited to add: For those who don’t sew, I should explain that making a buttonhole is somewhat challenging if your sewing machine doesn’t have an automatic setting or automatic buttonhole attachment. You have to concentrate and look closely at the markings you’ve made on the fabric to get it straight and the right size.

The hope with nimodipine is that because it is selective for cerebral blood vessels, I could benefit from a low dose, low enough to avoid the typical CCB insomnia.

Well, the saga of finding the right medication continues. I know it’s one you are all familiar with. From tomorrow I will be adding hydralazine, a direct vasodilator, to my current small dose of candesartan. This is because I have been unable to increase candesartan to a vaguely therapeutic dose without it causing low urine output. (I have given up on CCBs and ACE inhibitors for now due to insomnia.) If the hydralazine doesn’t work out, the next options are an alpha blocker or aliskiren (renin inhibitor). If no luck with all that, it may be time to fork out major bucks to try nimodipine (calcium channel blocker that preferentially affects cerebral blood vessels). Specialist was in a helpful mood today, considering the three new medications and a Doppler test with minimal resistance, so I didn’t go so far as to memtion nimodipine yet. Don’t look a gift horse in the mouth!

A new lecture released: https://vimeo.com/873023392 “Immunotherapy in POTS: The Johns Hopkins Experience” With Dr Tae Chung He talks about how he uses immunotherapy in his own practice, including wrangling with insurance companies.

Oh, I have heard people say that they crawl when they have to get out of bed when feeling iffy. According to an article I read by Dr Grubb, humans are the only animals to get orthostatic intolerance, so going quadrupedal temporarily makes sense. (Found out those fainting goats don't actually faint ... their muscles seize up.)

@MTRJ75, I'm so sorry that happened. I don't have anything useful to suggest, but it was nice that your dog licked your face when you were unconscious. So they really do do that!

Oh dear, something odd happened and the Facebook group might have disappeared. Might be a browser problem. I need to check on a different computer. Will update shortly. *** In the meantime, I just rediscovered this article, in which South Korean researchers also discover OCHOS, but call it OINH. It's from 2016, same year as Dr Novak's article. They found 183 patients who had normal vital signs during tilt table testing except for their cerebral blood flow velocity dropping. https://pubmed.ncbi.nlm.nih.gov/26427910/ That means there are about 300 patients confirmed diagnosed with this condition. Dr Novak said in a lecture that he gets about six new OCHOS diagnoses per year since 2016. Presume the South Korean folks have also added a few. Plus there's me in Australia! That makes it a rare disease according to most countries' definition, but I bet there are many more of us out there. Dr Novak identified sixteen people with HYCH in his study in 2018. He did not say how many more he gets per year in the lecture, unfortunately. I wonder if there are studies identifying HYCH by other names out there? Let me know if you spot one. This one from 2007 finds orthostatic hypocapnia in a group of CFS patients: https://pubmed.ncbi.nlm.nih.gov/17263876/ Do they actually have HYCH, not CFS? Or would a diagnosis of CFS (with PEM) exclude a diagnosis of HYCH?

Sorry, my text has gone small and I can’t seem to fix it.

Oh, they thought of doing it supine: (PCST = prolonged cognitive stress testing) Smart bunch, these scientists!

Abstract: https://pubmed.ncbi.nlm.nih.gov/33280488/#full-view-affiliation-1 Full study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7955388/ The authors wanted to investigate whether the “brain fog” that POTS patients experience when doing mental tasks seated corresponded to a drop in cerebral blood flow. It did. I would have liked them to give the cognitive stress test to supine patients as well, but perhaps that would be too hard because the testing was done via visual tests on an iPad. So the subject would have to lift their hand/arm to tap the screen. Maybe an audio test could work supine? Or use a screen but you answer verbally?

By the way, I forgot to say how I discovered I had an auto-immune condition. Last year, I got prescribed steroids (prednisolone tablets) for something else, and my orthostatic intolerance symptoms went away completely. I only took the steroids for five days, but felt somewhat better for three months afterwards, gradually returning to baseline. This happened twice. As I understand it, the only explanation for the post-steroid partial remission is that my immune system was dampened down and then gradually rebounded. I also happened to get saline and then albumin infusions to treat possible low blood volume. The saline infusions did nothing, which, along with the fact that other volume expansion measures didn’t work, shows that I don’t have low blood volume. But then the albumin infusions improved my symptoms, although only for a short time. Could not work out why for ages, then happened to find out that albumin has immune-modulating properties. So I had two “backwards” clues. Then some other stuff happened … not auto-immune related … and it turned out I had OCHOS. Then the professor who discovered OCHOS said in a lecture that he suspects OCHOS is auto-immune. So all a bit by chance really. I don’t have any typical rheumatology symptoms such as aching/inflamed joints or rashes or fevers. Only just got to see rheumatologist last week. He is trying me on Plaquenil next month pending blood tests. A long story … @Neomorph, I do hope you have some success with your new PCP.

@Neomorph, I’m not an expert in auto-immune matters, but I believe that the more enlightened specialists are weighing symptoms and patient/family history more these days, rather than relying on antibody tests alone. You may want to look at a local Facebook support group for recommendations for good rheumatologists in your area if you are able to choose who you see. (NB I don’t have lupus or Sjogren’s, but I suspect my mother had Sjogren’s. I have OCHOS caused by an unknown auto-immune or auto-inflammatory disorder.)

This is a good lecture about Sjogren’s and dysautonomia. I believe I read/heard recently that a large percentage of Sjogren’s patients present initially with autonomic symptoms.

@Pistol, that makes sense!!!