Sarah Tee

@Asmaa, I live near Melbourne! I think there will be some other doctors apart from Dr Spies who will be able to help you in Sydney. I am afraid that autonomic specialists are not plentiful in Australia so there may be a wait. Wait times are longer in the public system so if you can go private that might help. I would suggest joining this Facebook group: https://www.facebook.com/groups/270234122634/ It has a list of specialists that you can download (see the “Files” tab at the top of the group page once you are added as a member). You can also make a post asking for suggestions, or search the keyword “Sydney” to see recent posts. If you don’t have a Facebook account, may I suggest you create one just to access this group. (You can always close it later.) In the meantime, if you have a way to measure your blood pressure and heart rate at home, I would suggest doing a NASA lean test. (A Google search will bring up instructions.) This will give you an idea of whether you have POTS or not. (POTS is one kind of dysautonomia – there are other types.) If the NASA lean test indicates POTS, you can show the results to your GP and ask them to replicate it in an appointment. (Sometimes the practice nurse will do this test.) Make sure they do it correctly. Also, start keeping a log of your symptoms, blood pressure, heart rate, and anything else that seems relevant, such as meals, activities, hot or cold weather, period (if relevant). Try taking your BP and HR regularly every morning and night as well as recording them when you have an episode. You don’t need a fancy monitor – an Omron cuff will do fine.

That’s a shame. I think this would have been a selling point for many people. Still, it may get added later. And wouldn’t it be cool if it could “learn” when you are likely to faint as well. Or learn when you need to take a pre-emptive rest because your signs are heading in the wrong direction. I think it would be so handy for people who faint with little or no warning, for people who “freeze” mentally and can’t act or ask for help, and for parents monitoring youngsters or carers monitoring people who have trouble communicating. It is interesting that it was inspired by the person’s father having fainting episodes with no warning. Thanks for the investigatory work, MikeO!

If your specialist is feeling cashed up, the medical version can be had for about $US55,000 including set-up and staff training. Your country’s regulatory board would need to pass the device for medical use, but that shouldn’t be too difficult because it has been certified in Europe. As well as the device itself, a blood gas analyser is required. Most hospitals would have this already. You would also need a staff member trained in phlebotomy to take blood samples before and after the CO2 rebreathing. For research purposes, you can get the non-medical version for a bit less.

@Asmaa, can I ask where you live? It’s important that you see an autonomic specialist to get your symptoms checked out. If you can tell us which country or region you live in, we may be able to help. If there aren’t any dysautonomia specialists where you live, a neurologist may be able to investigate the loss of sensation in your hands and arms.

In terms of comorbidities, migraine and headache seem to be more common in POTS patients than in the general population: https://vimeo.com/359102751 As to pain caused by POTS, as in pain considered to be a POTS symptom rather than a comorbidity, there is coat hanger pain and chest pain. Also sometimes there is pain from small fibre neuropathy (SFN). The Dysautonomia International conference lectures are a good starting point to answer (or at least address) your questions: https://vimeo.com/dysautonomia

Thank you so much everyone for the interesting replies. Another area of our illness that could be documented and studied one day!

@Macho319, is the burning like lactic acid build up, so what a healthy person might feel if they tried to hold their arms up continuously for ten minutes, but coming on much quicker? Or is it another burning feeling? Sorry if I misinterpreted it. I was thinking lactic acid build up but happening quite quickly, as you mentioned it felt like doing heavy exercise with weights in your legs. Exercise intolerance can come from dysautonomia, but it can also come from other causes. In other words, dysautonomia could explain exercise intolerance, but so could other diagnoses. (I have exercise intolerance with my dysautonomia diagnosis. I also get tired very quickly when doing anything strenuous. I tend to just stop doing whatever it is, but if I continued, I would get that burning muscles feeling.)

@Macho319, Sorry if I missed this, but have you seen an autonomic specialist yet? They should be able to tell you whether these are likely to be dysautonomia or not. Or was it an autonomic specialist that said they didn’t know? Exercise intolerance is a common symptom in dysautonomia, and feeling that your arm and leg muscles are burning when doing activities that you wouldn’t normally struggle with could be exercise intolerance.

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. 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.

Does anyone else notice an improvement in their eyesight or hearing when feeling better? I know we have impairment with approaching syncope, like tunnel vision, muffled hearing. But how about a boost when you feel better, e.g. after medication or IV fluids?

I’m currently in partial remission again (took short course of steroids for allergic rash/itching last month), and am amazed at the difference in my vision. I mean, I also feel better in other ways – less fatigue, able to stand for longer, concentrate for longer. But my vision is different, especially outside in daylight. There was nothing actually wrong with it before that I could put my finger on, it wasn’t blurry or greyed out, no spots. It just feels like my brain switched to Technicolor. Everything is brighter, sharper, more colourful. Like it used to be in the “olden days”, before my symptoms took over full days, some ten years ago. It is quite “trippy” and unsettling, as though I have been transported back in time, or been in a coma and just woken up. I think it’s a combination of my eyes getting proper blood flow and my brain getting proper blood flow. (Don’t notice any change in my hearing, but perhaps I would if I had a trained ear like a musician or actor.)

@Sushi, that is a great invention for patient monitoring and good to know that companies do this. I am afraid I am chafing at the lack of testing and options in Australia. And I’m tired of chasing everything myself and having to do the work my specialist and GP should be doing, or at least helping me with, on my own. Such is the life of the dysautonomia patient!

@MikeO, that’s good.

@MTRJ75, I think the method of photoplethysmography is sound, but the company hasn’t chosen to register the device as a medical device and I can see no mention of a validation process on the website. So there’s no way of knowing how reliable this gadget is, unless the company decides to do studies on it later. If I have read rightly, photoplethysmography is what is used in fingertip pulse oximeters, and there are medically certified versions of those used in hospitals. As I said above, I wish the company had made a medical version as well, because that could be used for diagnostic purposes, and a “wellness device” cannot. It’s a missed opportunity because doctors could order it for a week like a Holter monitor. Oh well. (I’m not an expert and have never used a wearable so other folks may correct me. I don’t even own a smart phone because I am horribly clumsy and would drop it and smash it for sure. My trusty Omron cuff meter has been dropped on the floor several times with no ill effects!)

I watched a lecture with Dr Satish Raj in which he addressed this in the Q&A section. (I think it was Satish Raj – it might have been Dr Nick Gall. I watched a lot of their lectures a while ago.) Anyway, whichever expert it was explained that although autonomic specialists and patients know what “adrenaline surge” as a symptom refers to, nobody has measured anyone’s adrenaline levels during one of these episodes. So unfortunately we don’t know for sure that these unpleasant episodes involve a surge of adrenaline. You can see that this would be hard to study. You would have to get a bunch of patients who experience these episodes together and keep them at a test facility all day, maybe even overnight because some people get them during sleep. And then you would have to wait for the episodes to occur and quickly take a blood sample. So you’d have to book a dormitory for the test subjects, and have a phlebotomist on standby 24 hours a day. Another option would be to give people a blood test order to use at a pathology collection centre and have them rush to get blood taken when an episode happened. But that would be very hard for people to do, and collection centres usually only open 9–5, so that’s another limitation. So it’s very hard for doctors to study this symptom or write about it with no data. (Or give it an official name!)

@sarahloudobby, may we ask how your testing went? I’m finally getting tested for Sjogren’s (based on family history) so remembered your post. I hope you have been able to get some help with your POTS symptoms too.

@MikeO, I look forward to hearing how it goes. If they become available in Australia, or we are allowed to purchase from overseas, I will definitely consider getting one. Although I would hate to buy/subscribe and then find it showed my cerebral blood flow was normal … I highly suspect it isn’t, but not having had it tested, you never know. I did get a lead on transcranial Doppler testing at my old specialist’s hospital. It’s not being done for autonomic purposes (or at least the website doesn’t mention it), but it says they will investigate cerebral blood flow disturbances, so I am hopeful.

After some digging, I found that the technology used is photoplethysmography.

Another thing to note: It doesn’t actually read blood pressure.

I agree, the cost will be a problem for many. Unlike typical “wellness products”, it is really only for sick people, and sick people are likely to be disadvantaged in their earning capacity.

I wish there was also a medical device version that could be leant out to people like a Holter monitor. (Although it would have been in someone else’s ear so … !)

@MTRJ75, ha ha. Maybe a puppet show? I should have said, this is my autonomic specialist and he has done a little bloodwork (not much more than ANA). I am seeing a rheumatologist and an immunologist soon. I hope they will order some more tests. I have been lucky in a way that no-one has ever said my condition is psychological/psychiatric, at least not to my face. (I don’t get tachycardia so it’s hard for anyone to claim anxiety.) But they have done a lot of giving up.

@Sushi, did you see any indication of the cost? Edit: I suppose subscription means US only?

Looks like it has been tried out at Johns Hopkins: https://www.jacc.org/doi/abs/10.1016/j.jacep.2023.02.002 “We tested the STAT device at Johns Hopkins during Tilt Table Testing, and STAT was able to pick up blood flow abnormalities much earlier than clinical ECG and a Blood Pressure Cuff were able to. It detected blood flow drops 2-12 minutes before they actually passed out.“ Hari Tandri, MD

Wow, for me that would be amazing to be able to measure blood flow to the head. I was about to start chasing a hospital here in Australia that has transcranial Doppler via my doctor to hpget this measured, but maybe I can do it myself. I don’t faint, but for those that do this would be very good. I know some people have trouble responding to and articulating what’s going on when they are about to faint, so if this gadget could sound an alarm to alert the wearer, or anyone nearby, I imagine that that would be very useful. A bit like what service dogs do.