Sarah Tee

Just wanted to add that in my case the vascular permeability related to inflammation, if it is the cause of my low blood volume, is quite “mild”. It is no way compares to the many serious manifestations of vascular permeability that happen in serious illnesses. I am not even sure whether background levels of inflammation (which is what I may have due to a lurking autoimmune or autoinflammatory condition) could cause background levels of vascular permeability. I’m still waiting to speak to my specialist about it.

@Pistol, I’m very sorry to hear that too.

@RubywPOTS, I also struggle with differing levels of symptoms. (Mine follow a different pattern – I feel pretty terrible during the day, but in the late afternoon or evening, my symptoms often resolve completely. I call it Jekyll & Hyde syndrome.) I wonder of it might help to reassure you of your need for support to think of other illnesses that come and go. For instance, people with migraines or relapsing remitting MS go through periods of incapacity and periods of relatively good health. Even people with what you might think of as constant chronic conditions go through ups and downs. For example, people with Type I diabetes can go through unexplained periods during which their blood sugar is very unstable even though they are carrying out their usual management plan and diet. There must be a long list of conditions that come and go, or at least wax and wane. Also, on the days that you don’t need to use the disabled parking permit, you can pop it in your glovebox and not use it. If anyone asks you about it, you could say something like “I have a condition that comes and goes, a bit like migraines. Some days I feel okay, but other days I am at risk of fainting if I exert myself”. And maybe you could find a dog-loving friend, family member or neighbour who can’t own a dog themselves but would love to help out with occasional dog walking / play sessions when you aren’t up to it.

@ShupeJL10, I'm sorry the albumin is going to take a while to get approved (or not). Sorry if you've already mentioned this is another post, but do you have any indications of auto-immune or auto-inflammatory disorders, e.g. antibody blood tests, symptoms? Just a suggestion of another angle to pursue if you haven't looked at it already. And, one other thing, have you tried raising your bedhead? Sorry if these are things you've already tried. It's hot here in Australia and my memory isn't going too well today! I remember you have trouble with unwanted water retention as well, so raising the bedhead may or may not be problematic for that aspect. If I understand it right, some people in the US (if that's where you are) can make an appointment directly with a specialist. Maybe you could see a haematologist if you haven't already. I do hope you "catch a break" soon. Sarah

I would like to access reference no. 20. Is this a recording of a talk at a conference? Thank you, Sarah

Oh dear, I'm sorry to hear that. (I haven't had low red cells so didn't realise about the plasma.) I guess it is good that your doctor is willing to order it if it becomes possible. Has he not got any ideas on how to increase your plasma? This video might have some relevant info for you, although I'm not sure whether it covers low RBC and plasma situations. https://vimeo.com/540671549 25% is low. You must be feeling awful. My thoughts are with you, not that that's much help. My dad has contacted Dysautonomia International and suggested a lecture on IV albumin so that it can eventually become better known and easier to access. Do you live in the US?

Erythropoietin is something you could ask about, but it is not very commonly used: https://www.dinet.org/search/?q=Erythropoietin&quick=1&type=cms_records18&item=100 Here's one article by Blair Grubb et al: https://pubmed.ncbi.nlm.nih.gov/20838326/ Link to full PDF of article: http://utmc.utoledo.edu/clinics/hvc/syncope-center/pdfs/Erythorpoietin.pdf I am sorry you aren't having any good results with everything you've tried so far.

@Jyoti That is what I naively thought would happen, especially when I was referred to specialists. I sometimes read the "medical mysteries" type columns in the Washington Post and New York Times. The patient goes undiagnosed for years until they finally find a doctor who will sit down and listen to them, and who is conscientious and curious enough to do research and contact colleagues outside the consultation. If I was a doctor, I would never let a patient leave with an "I don't know". Both because it's a horrible thing to do, and for the intellectual challenge and satisfaction of solving a mystery. But I suppose I would go broke and suffer from burn-out pretty quickly.

@Pistol Ah, the blank stare. Better or worse than the eye roll and sarcastic sigh? :-)

@Sushi, I will take that into account. I wish all these medications were safer to take long term.

@Jyoti, I do a lot of musing too. I wish I could speak to a bunch of specialists as though I were a journalist or a colleague from another field, and ask them these sort of questions. In a consultation, they don't seem to be open to general discussion. It's always "Oh, that doesn't apply to you" or "I wouldn't be thinking about that". Maybe I should study human biology or something so I can learn more myself and pester the lecturers with questions. If you happen to get steroids again, perhaps you could you get your ep and norep measured beforehand and again while you are feeling better. Although you'd probably have to organise the tests yourself, and then specialists would look askance at the results because the tests weren't ordered by a doctor (even though that makes no difference to how the pathology lab runs them). I'm afraid that I know nothing about the HPA axis but I am sure others here will have interesting thoughts to offer.

Thanks, @MikeO. Yes, I am hesitant to take it in case it sets me back. My specialist has only mentioned it tentatively. We haven't discussed droxidropa yet. I'll add it to the list of things to ask about at my next appointment.

Thanks, @Sushi. I will approach it very carefully if I do decide to try it. Did you continue to take it?

@Carlz, I know this is an old post, but if you are still trying to find someone to help, I know of two specialists in Melbourne who will order IV saline therapy for patients who haven't responded to the usual medications, lifestyle changes, etc. Dr Chris O'Callaghan, private rooms in Heidelberg, public patients at the Austin Dr Edmund Song, private only, https://www.drsong.com.au/locations I will add that getting it ordered may only be half the battle unless you can attend a hospital at which the specialist works or has some connection. I live in the country and Dr O'Callaghan sent the order to Bendigo Hospital. We had a seven-month nightmare of horrible bureaucracy and terrible communication (actual nursing staff were lovely) only to find out there was basically an infinite waiting list for someone like me (i.e. not in danger of serious injury or dying). But when I started seeing Dr Song, who used to work at Ballarat Hospital, he ordered the fluid therapy and I was booked in and had my first session there within a month.

G'day folks, My specialist has mentioned that I could try atomoxetine (Strattera). Can anyone tell me how long you would need to trial this for to see whether it is helping? Is it one of those ones that you will feel a benefit almost straight away if it is working, or one where you have to wait a while to see? I will be asking my specialist more questions, but it's hard to find anything on this for dysautonomia even though he suggested that I "read up on it". I did find one trial (for neurogenic OH) that had patients take it for a month, so perhaps that is a reasonable trial time. I have plain old OI (normal BP and HR) so of course there's no mention of it in relation to my actual condition. Cheers, Sarah

@Birdlady, I’m sorry, I didn’t see your response until just now. In the meantime I have come to the conclusion that inflammation (and possibly vascular permeability and low blood volume caused by it) are at work. I have been pondering what to do. I do not want to take steroids long term at this point because the risks and side effects outweigh the benefits. One thought I have had is asking to take them for a shorter period in the hope of putting myself into some kind of remission. I did notice that, after the week of taking prednisolone, the reduction in my OI symptoms persisted for several months. I gradually got worse again until finally returning to my usual state of unwellness about three months later. I am going to talk it all over with my specialist and GP at the end of this month.

@Garden Gal, I’m so sorry, I didn’t see your response until just now. Funnily enough, I have come to the same idea about vascular permeability and inflammation. I have ulcerative colitis, which is widely suspected to have an auto component, although nobody has managed to prove it yet. And having one condition in that area makes it likely to have more. I will have a look at Azelastine. I have allergic rhinitis and have tried quite a few things for it and can’t quite remember them all! It seems to be by prescription here in Australia, but I am sure my GP will let me try it as my allergies are bad at the moment. Thank you for your thoughts and suggestions.

@Jyoti, it was an interesting week! Annoyingly, I strained my hands gardening on the first day that I felt better, so I didn’t get much done as I had to rest them completely. (It wasn’t heavy gardening, I had just underestimated how “out of shape” my hands were.) I still have the rest of the bottle of steroid tablets and am planning another “holiday week” soon. Main aim is to make it through a visit to the dentist, but I will also finish a small DIY job (painting a door) and maybe have a couple of mini excursions. It is interesting that the injection took a while to have an effect, but perhaps that’s how long it takes to work its way out from the injection site. My guess is that when your pain subsided, so did some inflammation, which could be systemic (Sjögren’s?) as well as in your back, and that may be why you felt better overall while the pain was gone. And, more speculation – I have been reading that steroid medications reduce vascular permeability by reducing the amount of inflammatory substances released by the body. (It is normal to have some vascular permeability, but inflammatory chemicals increase it beyond the normal amount. This is why your ankle swells up if you sprain it, as the capillaries let out extra fluid into the injured tissue to help it to heal. But perhaps in long-term generalised inflammation this same process works against us.) So maybe some people with OI symptoms have a background or systemic inflammation (auto-immune or auto-inflammatory) that makes their capillaries more leaky than they should be, and steroids can temporarily suppress that extra leak, bringing the blood volume up to normal. But some people feel worse on steroids, so I don’t know. Just a hypothesis I am nursing until proven otherwise! Good luck seeing Dr Grubb. Apparently he always runs horribly late, but spends a lot of time with each patient. I have an endocrinologist like that. Take a Thermos and snacks 🙂

@Jyoti, I have not seen Dr Grubb, but I hope you won’t mind my replying anyway. I have chronic orthostatic intolerance (not POTS), and I also experienced a complete resolution of my symptoms while on steroid treatment for something else (in my case, prednisolone tablets for a week for allergies). My current specialist also pooh-pooh-ed this, although it was at my first appointment, which was awful. He was late, disorganised, didn’t seem to listen to me, etc. etc. He has redeemed himself since then, maybe because I have since had a male relative accompany me to appointments and take over communication between times. We are going to tackle him again about this at my next appointment. I would really hope that Dr Grubb would take note of your antibody results and your response to the steroid injection.

@ShupeJL10, my specialist tried me on it once a week. For me, this wasn't enough, unfortunately. By about the fourth day, the positive effect had worn off. I would need to have it twice a week. But everyone is different, and, from what I can gather, people can have good results having it once a week. Again, because everyone is different, there could be people who get good results from fortnightly or even longer intervals. There is almost nothing published on this topic, so a specialist would probably try weekly infusions and see how it goes. There was supposed to be a large study done in Canada. That study was going to look at a weekly infusion of 5% albumin at a dose of 1g/kg of body weight, so that would seem to be a sensible starting point (of course taking into account the patient's medical history). https://clinicaltrials.gov/ct2/show/NCT03365414 Unfortunately the study doesn't appear to be going ahead. The lead on the study, Dr Zaeem Siddiqi, regularly uses albumin infusions on a small group of POTS patients who haven't responded to other treatments.

Apparently people with POTS can have a drop in circulation to their extremities on standing / when symptomatic. If you are measuring oxygen levels with one of those gadgets that goes on a finger, it will register that drop. Dr Nick Gall addresses this briefly in the following Q&A video in a question starting at 16.10. (The question isn't specifically about this, but he talks about pulse oximeters during his answer.) Video is very dark, sorry, but it's only talking so the fact you can't see anyone doesn't really matter :-)

Just wanted to clarify: In my earlier comment I said that there's no way to test for leaky vessels - I should have said that there's no test generally available. There is research into how fluid moves in and out of the bloodstream, done with nuclear markers. So it has been measured and studied quite a lot in human and animal subjects in research labs. But it's not something your doctor can order a test for, unless you are being seen somewhere very high-tech, like maybe the NIH Undiagnosed Diseases Program. The search terms "capillary permeability" and "vascular permeability" bring up some useful info. There doesn't seem to be any dysautonomia-specific research. In my case, "leaky vessels" is an assumption based on the fact that IV saline doesn't improve my symptoms and IV albumin does. A plausible explanation is that the saline is leaking straight out again, but the albumin is holding in place and (temporarily) boosting my blood volume up to normal.

P.S. You mentioned symptoms after meals. You may have already tried this, but some people find that eating smaller, more-frequent meals (e.g. four small meals instead of three main ones) helps. Reducing carbohydrate intake may also help. (Note that this would be done gradually, aiming for a lower carbohydrate intake, not a super-low ketogenic-type intake.) I personally find that eating a low-carbohydrate breakfast makes the biggest difference for me. Something to do with "breaking the fast", I imagine. It might be easier to tackle one meal at a time, so you could start by changing your breakfast and see whether that makes any difference. It can be a bit overwhelming to try to change your diet when you are tired and unwell already.

@Horizons1, I do hope this cardiologist will be helpful. Many people report that their symptoms vary - could be according to time of day; from one day to another ("good days" and "bad days"); or over longer periods of weeks, months or even years. (And some people don't get much variation.) Sometimes people can identify a trigger that makes things worse, such as overdoing things, catching a bug, or hot weather; sometimes a flare comes on for no apparent reason. So the fact that your symptoms vary does not mean that it's not real, or not dysautonomia. I have what's called chronic orthostatic intolerance - symptoms quite similar to POTS but my blood pressure and heart rate are normal. There are many variations in autonomic dysfunction. It's not well studied yet and researchers and doctors are still trying to group symptoms into syndromes (collections of symptoms) to try to get to grips with these conditions. Just as an example, here is an article on some recent research on patients who were suffering from orthostatic intolerance but had normal blood pressure and heart rate readings day to day and on tilt table testing. When researchers looked at these patients using different measures, they identified two new syndromes. https://www.brighamandwomensfaulkner.org/about-bwfh/news/expanded-autonomic-testing-helps-to-pinpoint-cases-of-orthostatic-intolerance

@Pistol, post-prandial effects were where all my troubles started 18 years ago, so I have read obsessively on this topic since being diagnosed. I do hope the Vanderbilt research leads somewhere. I can see it taking a while, but hopefully we'll all be around to benefit from it if it does come to fruition in, say, five years. Fingers crossed! I wish I had a better background in biology. I haven't done any since middle school, unfortunately. I did edit student materials in science and health in a university internal publishing department for a few years. Before I became unwell I was planning to get a basic science degree so I could qualify as a science editor rather than a "plain old editor". (In the States I would be called a copy editor.)