Sarah Tee

@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.)

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

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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