Sarah Tee

@MikeO, would they consider giving you an insulin pump, and would that give you more control than the fast-acting insulin?

@Estelle, I’m hoping the midodrine might be helping by now. You are most welcome to start your own post with questions. Have you tried your local dysautonomia support group on Facebook? https://www.dysautonomiainternational.org/page.php?ID=24 Can be a very good source for specialist recommendations.

@TorturedSoul, I’m sorry to hear that the doctor doing the testing wasn’t very communicative and didn’t suggest any follow-up. I think there are one or two folks diagnosed with HYCH here. I could only hope that the doctor who did the testing sent instructions to your neurologist on what to do.

@Sushi, that is great! I must have missed that episode. Was it in the final series?

@MaineDoug, that’s wonderful news!

Also, if you click on the heading “Our Specialists & Multidisciplinary Team” on the clinic page you could see whether any of the doctors listed are recommended by anyone in the Facebook groups. And you could also search for reviews, although review sites tend not to have many reviews for Australian doctors.

@Rinn, I live in Victoria so I haven’t tried to get referred there. I just tend to keep an eye on anything Australian that gets mentioned. I would suggest asking in these two Aussie Facebook groups: https://www.facebook.com/groups/270234122634/ https://www.facebook.com/groups/DysautonomiaInternationalAustraliaSupport/

@Caterpilly, I cut a tablet in half and swallowed one half as normal, with a small glass of water – no bitter taste. But then I put my tongue on the cut edge of the other half, and it does taste slightly bitter. So if you swallow a cut pill as normal, not bitter, but if you have trouble and it stays in your mouth for a bit longer, it is slightly bitter. But nowhere near as bad as steroid tablets, for instance, which I found I couldn’t swallow fast enough to avoid a very bitter taste, even when they were whole. Sorry I seem to have managed to get everything wrong!

Oh good! I hope they come through.

@Caterpilly, I am so silly at the moment. I just checked my tablets again and they are 200mg. I must have cut them into quarters at the start. My brain is a mess! Sorry for giving you wrong info. (For what it’s worth, I did not notice a bitter taste when taking partial pills.)

@Caterpilly, I didn’t know about taking the antacid separate to HCQ. I will make sure to do that. Sorry to hear you can’t cut the 100mg in half. It’s quite possible I wasn’t supposed to do that either. I just checked my tablets and they are not scored down the middle. Oops. I only did it for a week so hopefully no harm done. No worries about replying on this thread. I am checking alerts/posting again now. The hot weather in Australia and the wait for some testing was making me very stressed, but it’s now cardigan weather and my test is happening soon, so I am feeling a bit better. I do understand about being on your own and having to manage. I am on my own some of the time and always seem to get sick when no-on else is here, or at night when I don’t want to wake anyone up. I do hope you find something helpful soon. I understand the feeling your illness is getting out of control.

I’m approaching three months but I can’t report yet on whether HCQ has helped me because of some other stuff that has been happening. I just found out that I’ve been feeling awful due to some kind of reflux thing, maybe due to another medication, maybe due to problems caused by my old bowel surgery, maybe both. I have started an OTC antacid and made some changes to my diet and how I take my other medications, and am going to seek advice shortly on what else to do. Discovered it by chance. Would never have guessed and I doubt doctor would have worked it out either as it didn’t seem like reflux and I just thought I was getting worse generally and would not have mentioned it as being new. It manifested as feeling completely hideous on waking, but no specific symptom I could describe. That hideous feeling is gone already, and now I’m just back to good old OI fatigue etc.

@Caterpilly, don’t give up just yet. Could you cut a 100mg pill in half? From what I’ve read and experienced, your body does adjust and side effects can subside, so it’s still worth starting low and gradually increasing. Just because 200mg didn’t go too well for you straight away doesn’t mean you won’t be able to work up to it. I definitely couldn’t have tolerated 200mg in one go on day one, but now I take 100mg after lunch and 100mg after dinner with not too much trouble, just a slight GI disturbance that I can put up with until I see whether it works, and that will become negligible in the scheme of things if I feel better in other ways. So I would suggest taking it after main meals and splitting the dose once you get beyond 50mg. And make sure to have foods that are easy for you to digest. I did a low-residue diet to provide a cushioning effect. That’s because I used to follow that diet after I had my bowel surgery and it works for me. Your “easy to digest” foods may be different, of course. Many people recommend oatmeal or porridge as having a calming effect. *** I do understand reacting to things or always getting side effects. I’ve been there too with other medications that I had high hopes for. However, I have no colon, so I hope that if I can get used to HCQ, so can you. Take care, Sarah

Oh, of course I should add that DINET has been instrumental in all this. Thank you, DINET members and creators, past and present! Better get myself some dinner. Having a bit of a funny time with medication side effects lately but struggling on. Courage, everyone!

@Jyoti, I’m sorry you are having to go through this too. Words are failing me this evening. I do hope we will hear from you soon that someone is going to investigate.

Thanks everyone for your kind words. The weather has cooled off a bit here so driving to Melbourne (nearby capital city) won’t be too hard. I am keen to get it done, and nervous in case it shows nothing … argh! Another factor to consider is that about 10% of people don’t have “windows” in their skull to allow transcranial scans. I could possibly still get it done on the carotid artery in the neck. Dr Novak uses the middle cerebral artery (inside the skull), Dr Visser uses the carotid artery. I don’t know why each has their preferance, but as Dr Novak described OCHOS I have suggested we follow his method. (The new gadget from Stat Health uses the first branch from the carotid artery because it handily passes behind the ear, an ideal knobbly spot to stick something on your head.) (Edited to fix typo)

Folks, it’s finally happening. After two years of suggesting, cajoling, massaging, entreating and pestering my specialist to consider OCHOS and then to get me tested, he has finally made arrangements for me to have a transcranial Doppler ultrasound. The hospital that has the TCD set-up doesn’t have a tilt table (or can’t get the two together in one place?) so I’ll be doing a NASA lean test while being zapped with ultrasound. Also, for reasons I cannot fathom, as my response to medication rules out hypocapnia, I am to have my end-tidal CO2 measured. He says he wants to “diagnose me properly”, whatever that means. It has been six months since I took vasodilators, felt better and knew it had to be OCHOS. Six months of pestering, driving two hours and paying out AU$300 per appointment, reading everything Dr Novak has written on the topic, watching ultrasound technician videos, buying lottery tickets so I could fly to Boston to see Dr Novak, and worrying myself to distraction over getting this test. I’m already on the treatment for OCHOS (although it hasn’t been smooth sailing), but I need this test as proof, to have somethjng inarguable in my records, and to apply for government support if needed. It will be happening in the near future, no date yet, and I have to stop all medication for a week beforehand. Not looking forward to that! I don’t know what I will do if this test doesn’t show anything. I believe my hypothesis of OCHOS is correct, nothing else fits the evidence, I’ve studied this for two years, but the proof of the pudding will be in the ultrasound. Will report back when it’s all over! Hope you are all going okay and sorry I haven’t been visiting or posting lately. Sarah

Folks, I have decided to take a break from posting for now. I am going to try to have some "time off" from thinking about being unwell ... not that I can really do that, of course. Even now I'm having dental problems that have to be sorted out (I can't tolerate local anesthetic any more) and I am having trouble with vasodilators and have to see a new specialist (a chap who knows a lot about hypertension medications). Even had a minor bout of hyperkalemia, which wasn't pleasant. I will come back and report when I have something definitive to say. My wrists are continuing to improve and fingers crossed (ha ha) my OI will also respond to Plaquenil and I will find a vasodilator that I can tolerate. Best wishes to everyone in the meantime for upcoming surgery, appointments, work, family or just doing everyday things when you can! Sarah xx

@Sea otter, @Caterpilly Funnily enough, there is a machine that can induce blood pooling in the lower body (and hence low blood supply to the brain). I can’t remember what it it is called – negative pressure something? It looks like a smaller version of an iron lung. The research subject is sealed into a cylinder with the seal at about waist level, then a pump lowers the pressure inside the cylinder, and the lower pressure sort of “sucks” the legs outwards in every direction, making lots of blood flow down to the lower body. I imagine NASA or one of the air forces of the world invented it to investigate G force stresses on pilots. I saw it described in a lecture by Dr Grubb, I think. One of the dysautonomia experts, anyway. He described it as interesting to experience and very unpleasant! Edited to add: It’s called a lower body negative pressure chamber. Here’s a photo of an experimental subject in one: Just found out this technology can also be used for healing purposes by boosting circulation to the legs.

@MikeO, yes, they tried to select POTS patients who had autoimmune features. There was supposed to be a big trial of IV albumin for POTS in Canada, but unfortunately it was cancelled. You are right, this one won’t lead to anyone getting albumin or IVIg, but it paves the way for bigger studies. I believe they call it a pilot study. Gotta start somewhere – this is the first proper trial of IVIg for POTS, and in a way it is also the first proper trial of IV albumin for POTS even though it was supposed to be the placebo. Now the researchers can say to funding bodies: ”We got these interesting results. Can we have some more money to take it further?”

Found a link to the prepress version (PDF): https://assets.researchsquare.com/files/rs-3500596/v1_covered_47c0c14e-56a5-4023-b431-ada86da3f063.pdf?c=1698995976 I have had a quick read. They didn’t quite get the results they expected from the IVIg group, but they seem to have learned a lot and paved the way for further study. Yay!

Results are out for the first proper randomised controlled trial of IVIg for POTS! https://pubmed.ncbi.nlm.nih.gov/38311655/ When I read about this trial, which has IVIg as the active drug and IV albumin as the placebo, I *said* that they might find that everyone felt better because albumin also has immunomodulatory properties. And that is possibly what they found. Hire me as your assistant, Dr Vernino! 🙂 (The other possibility is that albumin boosted blood volume with a longer “sticking time” than saline. Or maybe it boosted blood volume and had an immune modulating effect as well.) Albumin has its risks, like any blood product, but it is waaaaaay cheaper than IVIg. Specialists in Canada have been using it for severe treatment refractory POTS patients for years: https://www.cbc.ca/news/canada/saskatchewan/katherine-kay-diagnosis-genetic-testing-1.4260019 (I do wish those Canadian specialists would publish some case studies at the very least.)

I suspect from the wording that The Alfred in Melbourne also has transcranial Doppler: https://www.alfredhealth.org.au/services/non-coronary-intervention-clinic https://www.alfredhealth.org.au/services/vascular-laboratory Again, they are not specifically using it for dysautonomia, so your specialist will need to either word things carefully (so as not to scare them off) or be persuasive and convince them that they can do it.

I was wondering whether anyone in Australia has seen Dr Yusuke Sata, either at The Alfred, where he seems to work with Dr Murray Esler (!), or privately. https://www.alfredhealth.org.au/services/hypertension-clinic https://cvs.net.au/specialists/cardiologists/vic/item/dr-yusuke-sata

@CJ65, as someone who speaks a little Japanese, may I point out that it is “takotsubo”. It refers to the shape of a fishing pot, which the researcher who characterised the condition thought the change to the heart resembled. When learning Japanese, I found that mistaking even one syllable, like “su” instead of “tsu”, inevitably led to me accidentally saying something rude!