Sarah Tee

By the way, I don’t have POTS, but I do have orthostatic symptoms and postprandial ones too. I have found that eating a high-carbohydrate breakfast would often make me feel worse. So porridge is out, for instance. Other meals didn’t seem to matter either way, but I try to stick to lower carbohydrate intake for general health reasons. A low-carbohydrate breakfast sadly didn’t make me feel normal, just “less worse” than porridge would! Also, weirdly, fasting before a blood test or procedure would sometimes greatly reduce my symptoms for the whole day, even after I had had whatever it was done and eaten lunch. But I found this impossible to replicate consistently. On other days not having enough to eat or regular snacks would leave me feeling worse than usual. So my diet pick is a low-carbohydrate breakfast followed by reasonably low carbohydrate intake for the rest of the day.

@Pistol, I will give it a good trial. Am going to lower starting dose and will see what happens. (Doctor said I could start lower than he suggested if needed.) You are a model of patience. I want to throw everything out the window about five times a day 🙂

If someone laughs, ask them: “What’s the joke – do share!” (in a friendly tone). If someone makes a comment about your walking, say: “Yes, I can walk, but only about five metres. Then I pass out and you’d need to put me in the recovery position and call an ambulance.” If someone stares, say: “Hi, sorry, do we know each other? I’m terrible with faces!”. I’m sorry some people are jerks. I don’t know where they got their bad manners. I remember it was drilled into me when I was young never to stare at people or comment on disabilities or differences, probably a bit old fashioned but better than pestering or staring at people. I don’t use a mobility aid, but I’ve noticed that if I say I’m unwell when dealing with a bank or similar, some people will become patronising and proceed to treat me like a five-year-old.

@Pistol, did you ever have headaches with verapamil? I don’t usually get headaches, but it’s been three days of verapamil and three days of headaches. (Not awfully painful, but enough to stop me from reading or having a normal day.) I’m going to halve the dose tomorrow and see what happens. Edited to add: It is listed as a side effect, even though verapamil is sometimes prescribed for headaches.

@MikeO, I hope the insulin helps. Do you use the pen on your thigh? I admire your data collecting. I need to get better at that.

I’ve now tried a couple of other vasodilators but no success. My blood pressure is down to a nice healthy level tho’, so that’s been good. No drops below optimal or dizziness. Just trouble with side effects. Next to try is verapamil. I am hopeful about this one because Dr Novak mentions it in his textbook in one of the OCHOS case studies, and I know some folks here take it with some success. I know that’s silly because we are all different but I have my fingers crossed!

No, haven’t had any sleep-related investigations. I sometimes have trouble getting to sleep, but once asleep I am okay.

@albertspa, the reason for the small frequent meals is to avoid large amounts of blood rushing to the digestive system, leaving the head even lower on blood supply than usual. This is mentioned in lectures frequently, although perhaps not in medical literature. I imagine the reason is that it is not mentioned in the literature is because it is almost impossible to measure blood distribution deep in the body, i.e. in the abdomen. (Measuring blood distribution generally in the body is hard, as is measuring blood volume, although there are new technologies spreading.) So no-one has been able to do a study on blood pooling in the abdomen in POTS patients yet. It is something doctors have deduced from their patients’ responses to large meals, but can’t prove. There is some research on the effect of carbohydrates being done at Vanderbilt University. There is a lecture on this but the audio quality is poor: Copied from another post of mine: Vanderbilt University researchers are looking at one possible cause: abdominal blood pooling caused by excessive release of a chemical called GIP, which signals for vasodilation in and around the gut. They’ve only studied this in people with POTS, but presumably this could apply more broadly. This is the pilot study: https://pubmed.ncbi.nlm.nih.gov/35232225/ And this what they are doing now: https://clinicaltrials.gov/ct2/show/NCT05375968?term=vanderbilt+venous+capacitance&draw=2&rank=1 If you click on “Show detailed description” after the brief summary it gives an explanation of the hypothesis. There is a natural counteragent to GIP made by the body, which you could call anti-GIP. (It doesn’t have a name yet, just a formula.) So this research could one day lead to a treatment. But it will be a while off. The anti-GIP chemical is available to researchers and has been administered to animal and human subjects in studies, but it isn’t registered as a medication yet. Also in the studies I saw, when it was being used in experiments to understand the chemistry of the digestive process, it was given intravenously. Edited to add: Another way we can deduce some of the above is that refractory POTS patients and I think also OH patients have been shown to respond to a drug called octreotide. It stops the blood vessels in the digestive system/abdomen from dilating excessively. Unfortunately it doesn’t act specifically, like the anti-GIP chemical I mentioned above. So while it is reducing excessive vasodilation in the abdomen, it is also doing other things that can end up being harmful.

Finding suitable subjects can take up to 40% of the budget of a research study. This organisation is seeking to create a worldwide registry to help researchers connect to people with Long COVID, CFS and fibromyalgia as well as healthy control subjects: https://www.omf.ngo/studyme/ Here is an article on the project on the Health Rising blog: https://www.healthrising.org/blog/2023/09/23/study-me-open-medicine-foundation/

About two weeks ago I made a very upsetting discovery that my doctor had not been looking after another health problem of mine properly, leading to irreparable damage. It’s not life threatening, but it is unpleasant and finding out about it at home alone late at night was a horrible shock. I had been thinking of seeing a counsellor to talk about how to ease back into “normal” life, as two months ago I finally found a treatment that works on my OI. Now I will be seeing her about this setback instead. GP clinic has been beyond useless about it, letting me down for a second time. Not one person has asked me if I am okay, do I need counselling, do I need to call a crisis line, etc. Ironically I have now had two solid weeks of presyncope (VVS type), chest pain, extreme brain fog, GI upset, nausea, tremors, dyspnea, sleep disruption, etc. from emotional stress. So the symptoms I had before are all back, plus more. HR and BP were way high too. (NB Despite all this, I am okay. My dad has been a staunch support. We are almost getting used to horrible things happening. We have a drill. Today I made pancakes even though it took me two hours to cook them all. Vitals normal now.) Anyway, I will be talking to the counsellor a lot about illness, and the feelings of grief and loss it can bring. Plus how (most) doctors suck but I can’t break up with the medical profession 🙂 Will report back as to whether it is useful.

This website is written by a person with orthostatic intolerance who decided to try a g-suit (as used by fighter pilots) for lower-body compression. http://oiresource.com/gsuit.htm I am sure some of you have already seen this, but I thought I’d post it as it is an interesting read to revisit or for the first time.

@MikeO, will you apply to be a prototype tester?

Having said all that, Dr Blitshteyn recently published this interesting article: https://journals.sagepub.com/doi/10.1177/0961203320988585?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub 0pubmed And she has this older one looking at autoimmune markers and auto-immune disoders in patients with POTS: https://pubmed.ncbi.nlm.nih.gov/26038344/

People who have Sjogren’s syndrome and autonomic dysfunction or MCAS and autonomic dysfunction sometimes find that treating their SS or MCAS leads to an improvement in their autonomic symptoms. But as I understand it these conditions are considered co-morbid with dysautonomia. They crop up together more than statistically likely by chance, and they feed into each other. There’s not enough research to say that one causes the other, or that they are both caused by a third thing. And it will probably turn out to be more complicated than that. Research is pointing strongly to auto-immune and auto-inflammatory involvement in POTS, but, apart from a tiny handful of cases in which a very sick patient sees a top specialist and gets IVIg or some other immune treatment, there are no clinical applications for regular patients yet. I don’t have POTS, I have OCHOS. I know my condition is auto-immune (or maybe auto-inflammatory) because it responds to immune-modulating treatments (I got these treatments for something else so this was discovered by chance). But there’s no way to find out what that auto-immune problem is, because they don’t know what to test for. And even if they knew what to test for, they couldn’t fix it, except maybe by IVIg (a general treatment). Well, I will never qualify for IVIg. It is very hard to get in Australia and is reserved for people who are extremely ill (bedridden, in severe pain, etc.) or in danger of dying. Luckily there are different medications I can take that help a bit, and I’m working through options to find one that makes me feel better without bad side effects. But knowing the cause of a condition sometimes doesn’t make any difference to treatment options. (Although I do think this will change for POTS in the next few decades.) Just my two cents’ worth.

@Neomorph, if the GI specialist isn’t helpful, it is worth trying a dysautonomia or EDS support group that covers your region on Facebook. They often have a list of specialists recommended by fellow patients. Sometimes people see a neuro-gastroenterologist. I do hope you can get some better care and that things turn around a bit for you. I had ulcerative colitis for some years and can sympathise with the digestive disruptions.

@Pistol, I change channels a lot, so I say yes 🙂

I suspect there would be lectures from the Ehlers-Danlos society or other groups on the topic of what a diagnosis might mean and how it can be helpful (or not) in life. (It comes up endlessly on the Reddit groups, although whether reading those would help or not, I don’t know.) You could get access to specialist physical therapy. It might lead to better understanding of your GI issues. Plus it could have an influence on decisions you make in your life, medical and general. Do you know if the gastroenterologist you got referred to is knowledageable about dysautonomia? If so, they will probably know about hEDS as well. *** Also, I am feeling a bit snarky about doctors this week, but shouldn’t your doctor be discussing this issue with you as an informed adult, not “refusing to entertain the idea”.

@Jas, have you tried asking in the two Australian Facebook support groups? I live near Melbourne but I don’t know much about cardiology. (My dysautonomia is on the auto-immune side, not the cardiolody side.) I could mention a couple of names in Melbourne in private practice, but whether they would be the best, I don’t know. Finding out who does what in the public system is a bit of a mystery to me. I think they get you to the right person in an emergency, but finding that person as an outpatient can depend on your GP or other specialists being clued up or being willing to put in some time asking around. Also, I’m sure you’ve already put this to them, but can none of your specialists do this, use their contacts? I find some doctors can be very lazy, unfortunately. P.S. Dr Dennis Lau in Adelaide might be a possibility, but he’s expensive. He is a cardiologist. He seems focued on POTS from his research, but his actual practice could be much wider. Presumably your GP could speak to someone at Dr Lau’s practice and see whether it might be worthwhile.

@akj, I think the 2023 ones are being released gradually. I have to admit, I have not paid registration to any of the DI conferences. I have an old computer and live in a different time zone, so that’s my excuse. I send the occasional donation instead and just watch the lectures as they are released to the free channel. I should get myself organised to register and watch live next conference.

I had missed this one somehow, so just thought I would post it in case others had missed it too: https://vimeo.com/737679293 Dr Grubb looks at the important studies for a long list of medications, and also for increasing salt and fluid intake, and IV saline. Very good overview. Also good Q&A in second half. He talks about auto-immune and auto-inflammatory aspects of autonomic disorders and cases he has collected of patients with POTS who have received biologics for other diagnoses and have had their POTS symptoms improve. I know @Pistol has mentioned Dr Grubb’s work on the innate immune system, which is very interesting. Note: The sound isn’t perfect but the slides are clear.

Still feeling a bit low in spirits, but managed to dig up some plants to share with a neighbour. It is called the flax lily and gets brightly coloured flowers and berries. https://www.climatewatch.org.au/species/plants/black-anther-flax-lily The flowers are food for one of our native bees: https://www.lfwseq.org.au/blue-banded-bee/ I’m not sure what eats the berries in our garden – probably parrots. Also called our occasional gardener/handyman to ask him to come and do some weeding. I guess he will be doing the exercise. Still feels like progress!

@MikeO, that’s a good idea to try to get back to a daily routine.

Thanks, @Pistol. I cast on a thick pair of socks in a pretty colour of sock wool to cheer myself up. They are knitting up quickly. Tomorrow I will make sure to do a little exercise and sit in the garden.

In case you missed it on the front page: https://www.youtube.com/watch?v=1eBNsav2sLA

I was doing so well the last two months since starting a calcium channel blocker, but I have had a couple of setbacks. First, I got the angriest rash ever after … wait for it … sweating slightly eight hours after applying a pea-sized amount of anti-itch lotion. Anti-itch lotion! The rash cleared up, thank goodness, but I did not like to risk getting at all sweaty again until it was completely gone. Then I got some bad health news (not dysautonomia), which really knocked the wind out of my sails. It is sorted now, medically speaking, but it was an awful shock psychologically. Now I just can’t seem to get back to my exercise routine, or get inspired at all. Any tips?