Sarah Tee

Stumbled on this very interesting poster presentation from doctors in the UK: https://www.endocrine-abstracts.org/ea/0031/eposters/ea0031p68_eposter.pdf The patient could not tolerate the side effects from octreotide injections, so they tried her on an insulin pump delivery mode. (It seems that octreotide had been delivered by pump for other conditions prior to this, possibly by the "endocrine team" mentioned in the study, so it was not that hard to parlay that experience over to someone with POTS who needed it.)

I know this is an old thread, but I just noticed that the Vanderbilt study that is looking into GIP is also measuring VIP. https://clinicaltrials.gov/ct2/show/NCT05375968 Just thought I would add this in case anyone was looking at this connection again.

I did find an older case study by the same group: "Plasma Exchange Therapy in Postural Tachycardia Syndrome: A Novel Long-term Approach?" https://sci-hub.se/https://www.amjmed.com/article/S0002-9343(19)30958-1/fulltext (You may need to click on "save" under the bird illustration to view this PDF depending on what kind of device you are using.)

I have tried a few "back doors" to see the case study, or even the abstract, but no luck. It still seems to be pending (pre-print/correspondence?), so maybe once it is printed it will have an abstract at least. I wonder whether the person in the case study has to continue with the plasmapheresis or whether a remission of sorts was achieved.

I think I found the post you saw on another Facebook group. It sounds like the researchers have published a case study (one patient) in the American Journal of Medicine and are going to be doing a trial soon. Unfortunately the case study is behind a paywall and there's not even an abstract. However, the title gives a bit of information: "Plasma exchange improves cognitive function in long-COVID related postural orthostatic tachycardia syndrome and autoimmune neurological dysfunction". Here's the post:

Just butting in again ... there was a research study where POTS patients undertook breathing physiotherapy (with a proper qualified physio). At the end of the study, most of the participants reported feeling a benefit. https://pubmed.ncbi.nlm.nih.gov/31743851/ This may or may not be relevant: There have also been a couple of studies dating back about a decade showing that POTS patients and other OI patients have abnormal end tidal CO2 results during testing. The most recent study was by Dr Peter Novak, and he came up with the term "HYCH" to describe a new type of OI.

I don't know Facebook very well, but maybe the person who does the DINET page shared a post from another organisation that had this info. And then maybe it got deleted or updated with different wording?

Urgh, sorry you couldn't find it again. Facebook is so annoying like that sometimes. I'm just trying to think whether Australia has a database of research studies. Found it: https://www.anzctr.org.au/TrialSearch.aspx Dr Lau has some research studies listed there, but they seem to be "information gathering" rather than testing treatments. I did see that Dr Blitshteyn and colleagues published a paper about treating people with plasmapheresis or SCIG: https://pubmed.ncbi.nlm.nih.gov/36008726/ (Not so much a trial, but reporting results in 7 patients.)

The doctor leading the study is probably A/Prof Dennis Lau, if that's any help.

@Stitches, I’m glad you’ve found this forum and also finally found some help from your neurologist. You will get lots of good support here.

I don’t have this symptom, but I was looking at something else on the Cleveland Clinic website and noticed this article. Maybe you have already read similar ones, or even this one, but here’s a link just in case it’s helpful: https://consultqd.clevelandclinic.org/unexplained-dyspnea-could-it-be-due-to-a-chronically-low-preload-state/

I was surprised by the "hypercoagulable state" one. I had not heard of this connection before. The authors linked to a paper on this topic: https://link.springer.com/article/10.1007/s12264-018-0295-6 You can read the full paper through Sci-Hub. Basically it says that orthostatic stress in the lower extremities causes changes in the body's coagulation system. The authors conclude that: "Abnormal coagulation is an important component of OI."

A quick summary of the study: Researchers took 65 people who had been diagnosed with POTS and had been unwell for more than six months and matched them with 65 healthy controls. They analysed their blood for biomarkers, looking for any that were up or down regulated in the POTS group compared to the control group. They identified 393 biomarker proteins, 30 of which were expressed differently in the POTS group. These differences pointed to the following in POTS: hypercoagulable state proinflammatory state enhanced cardiac contractility and hypertrophy skeletal muscle expression adrenergic activity. "These findings support the hypothesis that POTS may be an autoimmune, inflammatory and hyperadrenergic disorder." (The researchers note that they did not detect any difference in biomarkers between the male patients and matched male controls. This may have been due to having fewer male subjects included in the study.)

By the way, for anyone excitedly looking up the various biomarkers like I am, there is a mistake in one of the slides in regards to the inflammatory ones. It refers to "beta-2 macroglobulin". It should read "beta-2 microglobulin". It's correct in the published paper, which you can find here: https://www.nature.com/articles/s41598-022-24729-x

A very interesting new study, and a decent cohort size! https://www.youtube.com/watch?v=S6v2rQ7u2Do I imagine some of these biomarkers will turn out to be present in other forms of dysautonomia as well.

I hope it helps people who are still in the dark about their symptoms to get on a waiting list, and maybe gets some more funding for autonomic clinics in the US. But two years' wait with POTS even after you get a referral – yikes. I am lucky that I got referred before the pandemic and "only" had to wait six months to see an autonomic specialist here in Australia. I imagine his waiting list has blown out now.

I just wanted to add that a possible explanation for several doctors suggesting that you had orthostatic hypotension is that it is taught in medical school, and it is consistent with symptoms of feeling dizzy and faint on standing. It is unfortunate that they didn't follow up by doing an active stand test to see what your blood pressure and heart rate were actually doing. So often we patients have to do this stuff for ourselves!

Me too :-)

My dentist didn’t check my blood pressure or heart rate. (She probably should have before sending me home. Hmm.) My heart didn’t feel like it was racing but I imagine my blood pressure was high. Did you do okay after you got a note from your doctor? I do tend to quake internally at the dentist, but it wasn’t visible until now. Maybe it was just because I feel generally weak. I wish someone would invent a way to rejuvenate tooth enamel!

Thank you, I will try that. I only need a small filling right now, so that could work for now. I think epinephrine/adrenaline is the most likely thing to have given me the shakes but I’m going to ask my autonomic specialist. Luckily I have an appointment with him soon, before the dentist.

Oh, that’s interesting. I will look into that as an option. For maybe ten years I have had a bit of a problem with injections working somewhat slowly and I often needed an extra dose. Sorry to hear you only get partial numbing.

Not me personally, but I have read a few posts from people with POTS on another message board talking about how they overreact to anything scary, sad or otherwise stimulating. For example, people mentioned not being able to watch scary movies.

Perhaps you already know this, but I wanted to mention that chest pain is a fairly common symptom of POTS. (Cause unknown.) So if you have been thoroughly checked out for any dangerous causes of chest pains and given the all clear, it might be helpful to work on re-labeling the chest pain as "POTS symptom" or "adrenaline surge symptom" rather than "sign of impending heart attack or stroke". Of course, if the chest pain changes in any way or come in a different presentation, then you can always get it checked again. You have been examined several times at the ER, but perhaps you could ask your regular doctor to give you a heart health/stroke risk check up and assessment. Sometimes this type of assessment is offered free by health support organisations, e.g. Heart Foundation, that visit towns and set up temporary clinics. I know anxiety doesn't necessarily reduce in the face of facts, so this is just a small suggestion compared to the very good advice you have already gotten from the other people in this thread. I am sorry that you are going through all this. I had a close relative who experienced severe anxiety when I was younger. I wish now that I had known more about this condition and done a better job of supporting her.

Hmm, I did find a discussion on Reddit in the dysautonomia group in which a few people said they had difficulties tolerating laughing gas: https://www.reddit.com/r/dysautonomia/comments/ift03e/anyone_have_a_bad_experience_with_laughing_gas/ I am just coming off my first episode of BPPV so I will have to be wary that I may be more prone to vomiting at the moment, especially in combination with lying down/back in the dentist's chair. Still, my appt is some time away so hopefully I'll be recovered by then. Maybe the "no adrenaline" anesthetic injections are my best option.

G'day folks, At my last dental appointment, I unexpectedly had a bad reaction after being injected with local anesthetic. First time this has happened to me, so a bit of a surprise. It wasn't serious, but I began shaking involuntarily, like a dog on fireworks night, which meant the dentist couldn't work on me. (I think she was worried I was going to have a heart attack or something, but it wasn't that bad. The actual problem was that you don't want to be drilling teeth on someone who can't keep still!) Anyway, I plan to ask for adrenaline-free injections for next time. Is that right? The dentist also suggested I might do better on laughing gas. Any known problems for that with dysautonomia? I searched the usual sources but didn't find anything. Cheers, Sarah