Sarah Tee

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!!!

Okay, here are the tests that were ordered. Some of these might be Australian terms that are different to US ones. CK, CRP, urine – MCS, Pr/Cr, +/- phase contrast microscopy, ANCA, ESR, LFT, UEF, FBE, C3/4, ACE, immunoglobulins, IgG4 subclass, Fe studies I don’t recognise most if them, but I see there’s no ANA (I did have that at the start of the year). Don’t know why he ordered the urine one. I don’t have a UTI or any bladder problems. We never discussed any such. Is there any other purpose to it? Collecting urine is very hard for me, oh dear. At least it’s not the 24 hour nightmare!

@MaineDoug, I have an order for various blood tests before he will start me on plaquenil. The ACCP one might well be on there, I haven’t looked yet. I don’t have any stereotypical rheumatological complaints, but I do have ulcerative colitis (or did have – colon gone) which they have just about but not quite decided is auto-immune, and an auto-immune skin condition. Plus I’m pretty sure my mum had Sjogren’s (undiagnosed of course). Plus my uncle had MND, also considered as possibly having an auto-immune component. Quite the Rogues’ Gallery!

@Pistol, I’m sorry it didn’t do anything. I will book my eye exam now. Should have one anyway given my age. It’s all so unbelievably sloooow. I found out my OI was auto-immune in August 2022 and it’s taken me until this week to see a rheumatologist. Part of this is my specialist not wanting to talk about it until my dad intervened. Then I had to postpone the appt once because my dad was a bit under the weather (nothing serious but he couldn’t drive that day). That was another few months. I am feeling a bit panicky because my dad is 82 and I have no other support nearby. He is very healthy but I never imagined this would drag on so long. I hate taking up his retirement. A bunch of rotten stuff happened with a GP this year and we still have to clean up the mess she made. One silver lining is that the unpleasant skin condition she failed to treat properly is sometimes treated systemically with plaquenil. Nobody would ever prescribe it for me for that purpose here in the backwoods, so yippee!

@MaineDoug, that’s so great about your surgery. The rheumatologist thinks it’s too big a risk to try biologics. Who knows, I may change his mind. I may not be “sick enough” in some ways, but I’m rapidly approaching 50 and getting desperate and worried about my future alone as a disabled person. Recently I’ve really suffered because of the cognitive difficulties. Plaquenil is three to six months to see effects, another big chunk out of my life. I lurch between mild hope, absolute panic, and slightly numb in front of the telly. I need to have major bowel surgery but the cognitive difficulties are making that impossible. My dad tries to help me but he has mild hearing loss and no matter how often we ask, doctors won’t speak up, so he just can’t hear what’s going on in appointments. Nothing compared to your recent difficulties. Did you get the injections? I do hope they helped.

Thanks folks for all the comments. @MikeO, you’re right, I’m still working on finding an ACE inhibitor or similar, haven’t given up on that angle. So far I can only tolerate low doses – helps a bit with OI symptoms but not enough to function. Once I get to something approaching a therapeutic dose, the side effects appear. Sigh. I’m hoping that a combined approach of immune-type treatment and vasodilator will work. The plaquenil will hopefully reduce the bad antibodies that are causing my cerebral arteries to constrict, taking me partway to normal. Then the ACE inhibitor (or other vasodilator) will take me the rest of the way to normal, or at least to functional for everyday activities. It’s a punt. No-one knows which antibodies cause OCHOS. I suggested it because it was the safest option in the DMARDs that seemed vaguely plausible and that the rheumatologist was likely to agree to.

@Neomorph, enjoy your winter! I do have airconditioning, thank goodness. And cool packs in the fridge. Plus a big fan!

Well, it went okay. He has ordered some blood tests and agreed to try me on plaquenil. Although he said “for three months” and from what I have read you really need to try it for six months to be sure. But I guess we’ll cross that bridge when we come to it! I doubt the blood tests will show anything. Whatever the antibodies are in OCHOS, they won’t be on current tests. And I don’t have any classic signs of rheumatological diseases. (Dr Novak believes that in one type of OCHOS, the type I have, antibodies are causing vasoconstriction in the cerebral arteries or arterioles.)

@Birdlady, I’ve been waking up with numb hands and lower arms too. Sometimes one, sometimes both. It started about six months ago. It wears off very quickly, as soon as I move my arms about, but it does seem odd. No prickling feeling like you usually get with pins and needles. At first I though I was lying on my hand, as I am a very awkward sleeper. But I don’t see how even I could lie on two hands! Did you mention it to your specialist?

I am suffering more from heat intolerance this year, and it’s only early summer. I am not sure whether I have gotten worse since last year, or whether it is the calcium channel blockers I’m taking at the moment. I might have to switch to iced tea!