Sarah Tee

I don't know whether it is a DAXOR set-up or not, but Mayo has a reasonably detailed description of blood volume testing here: https://my.clevelandclinic.org/health/diagnostics/16793-blood-volume-testing It seems to have been used mostly for kidney and heart failure patients, as far as I can tell. New developments in the 80s (?) meant it was no longer needed routinely, and the machinery got old and was retired. I also saw a post from someone who used to work in nuclear medicine/testing saying that another factor was that it became harder to source the isotope. This Mayo article states it is most often ordered for patients in intensive care. My specialist tells me that there is nowhere that does it in Melbourne. I wonder if there might be a machine hidden away in a dusty corner of a hospital in Sydney (our largest city).

Thanks, @Pistol. I am finding it very hard to concentrate on anything. I do usually knit, read or watch a gripping or funny tv series. I wish I could get albumin at home. I am going to discuss this with my specialist at our next appointment, end of Feb. I have a feeling it won't be possible but you never know - I thought it wouldn't be possible for him to get me in to IV fluids at all and he managed that. I managed to cobble together a week's worth of prepared meals from a couple of places in our nearest large town, which my dad kindly collected for me. So I have healthy meals with no cooking required all ready to go. Chatting to you guys always helps :-) I also phone friends and ask them what they have been up to, without mentioning that I am ill. It takes me out of myself a bit.

There's no way of testing for it, but that's what my specialist and I suspect. The reason for this is that IV saline doesn't do anything for me, but IV albumin helps. Albumin maintains what's called "oncotic pressure" in the blood. It basically holds fluid in the blood stream, and can even draw in some fluid from the interstitial spaces. My suspicion for the cause of my leaky vessels is a combination of chronic inflammation and a sub-clinical connective tissue disorder. My clue to the inflammation playing a role is that prednisolone makes me feel normal, presumably by the mechanism of reducing capillary leakage by reducing inflammation (which it is known to do). My clue to a sub-clinical connective tissue disorder playing a role are a few signs that indicate a collagen disorder, such as needing extra dental anesthetic, having skin that marks easily, and having the muscles in my bowel wall lose tone in a rare bowel surgery complication. (And having orthostatic intolerance, to state the obvious.) *** If the desmopressin and fludrocortisone don't work, maybe you could ask your specialist about IV albumin. Unfortunately there's not much published on it, but it is used occasionally for refractory POTS and other OI. We are hoping that Dysautonomia International is going to invite Dr Zaeem Siddiqi to give a talk on this topic. He is one of the few to publish anything on IV albumin, although other specialists do order it. Dr Siddiqi was supposed to be leading a study on its use but it was withdrawn for reasons I haven't been able to find out, so all that's out there is this poster presentation from a neurology conference: https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/p040-efficacy-and-safety-of-periodic-albumin-infusions-in-refractory-postural-orthostatic-tachycardia-syndrome-a-comparative-study/60BFDDF0558BE61F70799DEE202A0AE9 And this newspaper article about one of his patients: https://www.cbc.ca/news/canada/saskatchewan/katherine-kay-diagnosis-genetic-testing-1.4260019 *** Octreotide works for OI by reducing blood flow to the abdomen/gut. It blocks a chemical called GIP, which is released naturally when you eat as a signal for blood vessels in that area to dilate and have plenty of blood ready to slurp up the nutrients from your meal. But in people with POTS, it appears to be released in greater amounts than normal, according to a recent small study by Vanderbilt University researchers. Original small study (edit to link to full text): https://www.ahajournals.org/doi/10.1161/HYPERTENSIONAHA.121.17852 Upcoming big study: https://clinicaltrials.gov/ct2/show/NCT05375968 (Note that they are only looking at patients with POTS. The same effect may happen in other types of OI with worsening postprandial symptoms.) The downside of octreotide is that it doesn't just block GIP, it also interferes with other chemicals that are doing their normal job at normal levels. This can lead to side effects and gall bladder damage. The good news is that there is a chemical produced naturally in the body that specifically blocks GIP, and this chemical has been synthesised and used in studies on humans. The bad news is that it is not available as a medication and the studies were basic science investigating the human digestive system. Also, in these studies, the anti-GIP chemical* was given intravenously. To be practical for everyday use, it would need to be able to be injected subcutaneously or taken orally. So if GIP turns out to be the culprit, and if the GIP antagonist is shown to be safe and effective for OI, and if it can be brought to market as a medication for self-administration, then it would be a good way to prevent excessive amounts of blood rushing to the abdomen after meals. (I haven't heard anything about octreotide working for leaky vessels, but I'm not a doctor or researcher so I could have missed that aspect.) *The GIP antagonist chemical doesn't even have a name yet, just a long chemical formula. It is mentioned in the first Vanderbilt study I linked to at the end of the "Discussion" section.

Not so much mood swings, but I feel very down when symptomatic. I also get irritated and tire easily (cranky toddler type tired). I am one of those odd bods who gets symptoms during the day and feels close to normal in the evening. Emotionally and physically, I am a different person at 11am and 11pm. I call it Jekyll and Hyde syndrome! My refain during the day is "I feel awful, I can't go on, this is terrible". At night, I'm still aware of my illness and the unhappy situation it has put me and my family in, but I feel more able to cope with it and, while I certainly don't feel cheerful, I also don't feel despair. My theory is that low blood flow to the brain and fatigue make me miserable and easily tired. I hope you are feeling better now and that you got your groceries sorted out. It may be minor in the scheme of things, but when you are ill it's not easy to just fix mistakes or pop out shopping to replace missing items you were relying on.

I just realised what was bothering me about this series – there are almost never any nurses in evidence. In real life, nurses are in and out of patients' rooms all the time, at a minimum taking obs, and, with quite sick patients, they'd be helping them to eat, take medication, go to the loo or manage catheters or bedpans, taking instructions from the doctors, etc. And yet every dramatic scene between the doctors and patients is uninterrupted. Oh, and you never see a cleaner or a porter either (unless for some plot point).

@MikeO, it's this one: https://www.imdb.com/title/tt1503403/ They only "diagnose" POTS for about five minutes of the episode so it might not be that interesting. The patient's heart attack is stated to have been caused by POTS, not any underlying cardiac condition, unfortunately. On the plus side, in another episode, they considered and ruled out autonomic dysfunction in a fairly sensible way during a differential diagnosis scene. I just remembered that on another forum I used to visit people would occasionally pop up asking "Can POTS cause a heart attack?" and would (slightly shamefacedly) admit that they were worried because of seeing this episode of "House". In the UK, there is a requirement that medical dramas must be accurate in portraying illnesses and medical procedures. (I don't know how well they actually manage to follow that rule - I am sure mistakes happen. And I don't know what punishment, if any, applies if they get it wrong.) I wonder if there is a similar rule in the US?

There's a medicine called Buscopan (hyoscine butylbromide) that calms bowel spasms. I was given it in hospital a couple of times after bowel surgery, when I had gradually started eating again and my bowel protested a lot. It was very effective, although I had it as an injection so it worked quickly. BUT I am not sure whether it is suitable for patients with dysautonomia, and it is contraindicated for any kind of slowing of the GI tract, so you would need to run it past your specialist and proceed with caution. It might be contraindicated for someone with intermittent gastroparesis or any history of gastroparesis at all. I can say that my doctor told me never to take it as I now have a type of constipation. She worded it that it temporarily sedates your bowel, stopping spasms, but also putting you at risk of further slowing if your transit isn't normal speed.

The other week I accidentally caused myself a horrible itching episode that lasted two days and left me exhausted. I am worried that I still haven't returned to my "normal" health level. I am not sure how to recover except by resting. But I already do next to nothing at the moment (at least during daytime) because of my OI and the hot weather (currently summer in Australia). A relative is helping me with laundry and dishes, and I've abandoned the rest of the housework for now. I did think of signing up for a meal delivery service for a week. Beyond that the only thing I can think of is to stay in bed, or at least stay fairly flat by reclining on the couch. But I'm reluctant to go down that path. Does anyone have any suggestions? I wish I could have a couple of weeks in an old-fashioned "convalescent home" with sea air, stewed fruit and custard, and 1950s nurses in starched uniforms.

Oh, one more thing. My dad wrote to Dysautonomia Intnl and suggested that they get Dr Siddiqi to give a lecture on his use of albumin infusions in refractory POTS patients. They responded and seemed interested. I hope it will be included in the next conference so more doctors can hear about it and maybe we will see some research or at least a few more case studies published on this topic.

Had my 4th infusion last week. Unfortunately I was a bit unwell in January and didn't get four in a row as planned; but I did have three in a row. We changed the fourth one to one bottle (500mL) for a couple of reasons. One bottle "felt enough" to me. I was getting slight headaches in the days following two-bottle infusions. I wanted to reduce the time I had to spend in the hospital because the chairs and the sitting still are so uncomfortable to me. Unfortunately I wasn't able to gauge whether one bottle had the same effect as two bottles in the days following because I managed to make myself ill. I was wearing a different bra on the day I went to the hospital than I usually wear at home (still one that I wear regularly and has never caused problems before). Maybe it was the hot weather or the long day, but for the next two days I had a severe outbreak of itching on my torso, arms and hands spreading out from where the bra band had been resting on my skin. Bizarrely the itching didn't start until hours after I had gotten home, changed into my PJs and gone to bed, and there was no redness or rash of any kind. I am sure it wasn't the laundry detergent because all my clothes are washed in the same one, including the undies and clothes I was wearing, which were also in close contact with my skin. It was truly horrid. I was plastering myself with oatmeal cream, steroid cream, and even made an attempt at a "wet wrap" as done for eczema patients between cool showers. I feared I might have to go into Emergency for something stronger (GP not available as it was the weekend). Thank goodness it subsided on its own. I have always had slightly sensitive skin, and it seems to be worsening as I get older and frailer. It is sensitive to mechanical stress rather than allergies. I suspect I have a sub-clinical connective tissue problem. I will have to be more careful in future.

Thanks, @Pistol. I am hoping the recuperation time will be offset by a reduction in digestive distress and the size of my abdomen (it's a bit distended). Meeting new surgeon soon for second opinion.

I recently watched a documentary in which someone was assessed for having multiple fainting episodes per day. He was admitted to hospital for a couple of days and monitored closely so the doctors could see what was happening when he fainted as he was hooked up to various monitors. It was a bit like a sleep lab in that he was monitored on video by a nurse so that immedicately when he had an episode they could come in and check his responses as well as having the monitor recordings. I hope you can find someone to help. It can be a very long journey. This is a UK organistaion that helps people with all kinds of fainting: https://heartrhythmalliance.org/stars/uk/ It publishes a lot of good information. I would suggest reading through the site and watching some of the lectures and patient talks (free but you need to register). I think anyone can join whether they live in the UK or not. You and your family may have an “aha” moment in which you recognise a disorder being described as matching your dad’s experience. For example, you could have a look through this list of conditions: https://heartrhythmalliance.org/aa/uk/conditions (Not that I’m suggesting self-diagnosis, but sometimes you need to come up with ideas for what to push for, rule out, etc.)

Thank you for the link. The first item you highlighted reminds me of the decoy protein that Dr David Kem was working on. Mopping up “bad” molecules seems like a promising strategy, especially now that complicated molecules can be modeled with computers and their interactions tested virtually to find candidates for binding to and neutralising antibodies and other nasties.

I was idly watching an old episode of “House” before bed … they just diagnosed someone with POTS … although it’s only halfway through the episode so they are bound to find out it’s something else.p in the end. Unfortunately, they said the patient had a heart attack because of POTS. Sigh. Plus he looks really healthy, is an adult male, and had no trouble standing still while chatting to someone waiting for a taxi for several minutes earlier in the episode. Also I think he only just got sick, so can’t meet the 3 or 6 month duration criteria. Oh well, at least they are giving him fludrocortisone.

Just a quick addition: A couple of people had asked me whether my serum albumin was normal. I didn’t realise it, but my specialist had tested this a while ago as part of a panel of blood tests, before we even thought of albumin infusions, and it was normal. This is good news, because a low serum albumin predicts poor outcomes for surgery, and I have to have bowel surgery soon. I have an appointment with my specialist in February. Will have to hash out whether I can get infusions at home (unlikely) or whether he will prescribe prednisolone. So far these are the only treatments that have worked for me. But maybe he has something else that I can try. It is hot in Australia at the moment and despite aircon I am feeling pretty miserable between infusions.

I have trouble sometimes. It’s not that I can’t speak altogether, but I have a lot of trouble “speaking up”, so interrupting or correcting people, or asking for things. This is a big problem for me in medical settings, even when I’m dealing with nice people. I hate it. I have started making lists afterwards of things to request or decline at the start of appointments or hospital visits, but this only helps me for the next time something happens. I can answer questions and appear normal cognitively, but underneath I am often struggling.

On this forum, you will find plenty of diversity, with people discussing various kinds of dysautonomia. Do feel free to start posts asking about NCS. I believe NCS goes under a few other names, and perhaps the categories aren’t very well defined yet, or might differ in how they are used between countries and different generations of doctors. For example: http://www.dysautonomiainternational.org/page.php?ID=26 So you might have to do a few different keyword searches to bring up older threads on this topic (or members will help track down useful threads for you). I am not sure why there is so much content online about POTS. Are patient advocacy groups doing a great job getting it out there? Is research and the connection to Long COVID bringing it to public attention? Is it more underdiagnosed than some other conditions? I don’t know. While it is good that POTS becomes more well known, it can backfire with people having similar symptoms that don’t turn out to be POTS and then either giving up on a diagnosis or being told by poorly informed doctors “You don’t meet the criteria for POTS so there’s nothing wrong”. It took me ages to work out that POTS is just one type of orthostatic intolerance. It held back my diagnosis a bit, because I don’t have tachycardia, but I eventually found an article that mentioned the other kinds of dysautonkmia, realised I could have such a thing as “plain OI”, and got referred to a specialist. Welcome to the forum and post away!

Please note: This petition is not related to or endorsed by DINET, but I have received permission to post this link. It is for Aussies and Kiwis to sign only. I am not the instigator, but am a member of the same local Facebook group as she, and have been trying to get it to 5000 signatures. The Change.org website asks for donations once you have signed a petition. Please be aware that donations made on this site go to Change.org, not to a dysautonomia support organisation. Feel free not to donate! If you are able to share the petition with other Aus/NZ folks that would be much appreciated. You can do this yourself rather than necessarily following the Change.org prompts. Again, feel free not to. https://www.change.org/p/medical-community-make-intravenous-fluids-a-standard-treatment-for-dysautonomia Thank you, Sarah

I have OI with normal blood pressure and heart rate, even during poor man's TTT. Is that how yours goes too? I would say it is worth cautiously trying any medication that can help OI, can be stopped rapidly, isn't contraindicated by your medical history, and is unlikely to have lasting negative effects. That has been my approach with my specialist. I have tried just about everything listed below, bar a couple that are too risky, not available in Australia, or contraindicated for me. Some of these will not be suitable for you given that water retention is a problem. Even something seemingly harmless like raising your bedhead might affect water retention. Just listing everything anyway because if your specialist raises unsuitable options you can be ready to say "Nope, not for me". 1. Increase fluid retention and/or blood volume extra salt and water raising bedhead fludrocortisone (Florinef) – is a steroid but different class; can cause water retention desmopressin saline infusions more obscure options such as EPO, albumin infusions (see list linked below) 2. Increase venous tone (vasoconstriction) midodrine some others (see list and lecture linked below) 3. Stop blood pooling in lower body compression garment that covers the abdomen up to the waist, e.g. tights, leggings clenching and unclenching large muscles (thigh, buttock) before standing and when standing strengthening those muscles with exercises more obscure options such as Octreotide (stops blood rushing to gut after meals; rarely prescribed because of risk of gall bladder damage) smaller meals lowering carbohydrate intake 4. Assorted other things stimulants Mestinon see video lecture Pharmacological Treatment of POTS (ignoring those treatments related to tachycardia) see list POTS What Helps? (ignoring those treatments related to tachycardia) immune treatments Dr Peter Novak seems to be the leading person who publishes on "plain OI" (not POTS, not OH, etc.) at the moment. He has identified some new types/features of OI, called OCHOS and HYCH. (I am sure other specialists know about it and treat it as well.) He has a textbook of case studies that includes various kinds of OI. He mentions that for "plain OI" he sometimes has success with calcium channel blockers or ACE inhibitors, which are both blood pressure reduction medications. Reason that these help some people is unknown. If you would like to read his research, let me know and I will link to it. He did do a lecture on OI syndromes for Dysautonomia Intl but unfortunately the audio isn't very good. https://vimeo.com/479624617 Having said all that, trying medications can be disruptive and tiring. I seem to be sensitive to things too, and trying so many has taken me a long time and been very disruptive. The only things that have worked for me so far are prednisolone (coincidentally given as a short course for allergies; docs do not want me to take it longer term) and albumin infusions (only help me a bit and inconvenient to access). I've still got a few more to try. I can completely understand someone saying that trying medications is going to be too disruptive for me and I don't want to risk bad reactions and possibly setting my health back or going into a flare.

It might be a balancing act between: running it in slowly enough that it "sticks" but not so slowly that it is escaping from the blood circulation at about the same rate it goes in. How about trying it over two hours first thing in the morning? Did the two-hour infusion seem to stick, at least until bedtime? (I mean, in regards to not peeing it all out quickly as well as feeling better.)

Was the trainer referring to GI (glycemic index) in labelling oatmeal as a healthy food? I'm not an expert in this area, but I recently watched a program about this subject in which an expert (probably an endocrinologist) pointed out that diabetics need to be looking at their total carbohydrate intake, and that GI being high or low was irrelevant in that particular calculation. Glad to hear peanut butter and toast worked out. That is my breakfast of choice! And it may be a coincidence but porridge for breakfast seems to worsen my symptoms, which is sad because I am part Scottish. (I can eat it later in the day with no trouble.)

Lauren Stiles, who started Dysautonomia International, has Sjogren's syndrome plus POTS. I remember watching a video lecture in which she spoke about her experiences, but can't remember which one it was. Maybe someone else can help. I think it was on the Dysautonomia International Vimeo channel. I did find this lecture, but it's with Dr Brent Goodman, not the one I'm thinking of. https://vimeo.com/359097230 I'm thinking of asking to be tested for Sjogren's (SS-A, SS-B if I have it right) because I suspect my mother had it. I don't have the classic SS symptoms yet, just dysautonomia, plus ulcerative colitis. I am sorry to hear you are having a bad time with your symptoms lately. I have been getting worse gradually for about 18 years now, but this last year I have felt like I am "losing condition" fast. It's a real worry.

Oh my goodness, have I just discovered something? (emphasis added by me) https://www.ncbi.nlm.nih.gov/books/NBK534809/ Does the prednisolone I took make me feel better because I am losing less fluid from my blood? (In another thread, I described how I responded to albumin infusions; hypothesis is that the albumin, which comes suspended in a liquid, allows my body to hold onto that extra liquid.) (Prednisolone and prednisone end up the same in the body, if I have it right, with prednisone being converted to prednisolone.) Have to read this article this evening when my brain is working better!

I saw this BBC program a while ago on Australian tv and was very impressed by the doctors involved and touched by the patient stories. At the same time it made me feel sad and angry because the care the average person receives is so far below what is shown. Someone has put it up on the website Dailymotion (a more basic version of YouTube). If you go to the website and search "diagnosis detective se1", four episodes will come up. (Only one series was made.) It is presented by Michael Mosley, but don't be put off by that. It is a much higher standard than his other programs and he only plays a minor part in the stories. The focus is on the patients and specialists. Without giving anything away, several of the patients are investigated for or end up having dysautonomia issues. You may also spot some of the other diagnoses before they are revealed in the program. It is a little sad, but most of the people get a resolution of some sort. Edit: Realised I forgot to say what it’s called – “The Diagnosis Detectives”.

@MikeO, I'm sorry to hear that. You would expect a faint team to cover all types and causes of fainting. Also, anyone medical should be interested and engaged when relevant new information comes up, not annoyed! I hope your PCP will be more helpful.