Sarah Tee

@MaineDoug, I’m so sorry to you are having to deal with hearing loss on top of everything else. Can they do anything for it?

I lost a small amount of weight! I have come up with a small rotation of simple meals and snacks. Plus summer is here and there are early summer fruit and salad items that take little preparation. In a couple of weeks I’ll be able to get a basil plant and maybe a tomato bush to pop on the verandah.

@Pistol, I’m so sorry you had those injuries. Thank you for the detailed description. It does sound tiring.

On a related topic, I just remembered I was sent my medical records a while ago, on paper and on a CD. And the files on the CD appear to be editable! This means I can cut all the wrong/irrelevant stuff out. Woo hoo! I am just about to start with a new GP – hope springs eternal. @MikeO, when/how do you see the referral letters? I am trying to work out how to intercept them in future.

I have found a few older posts on this topic, which were helpful as always with the DINET archive. Any recent experiences? I may find a medication that works long before I get the neuropsych appointment, but I thought I might get it happening anyway. (I figure it would be handy to have on file in case I need disability accommodations or to apply for govt help in the future.)

Has anyone had this happen, and, if so, how did you resolve it?

I’m not sure whether I’m allowed to post a link here, but you can find it by searching Facebook. I have calculated that Dr Novak has diagnosed about 140 people with OCHOS. That’s about 100 from his original study, plus he stated in a lecture that his team diagnoses about six more each year. Not sure about HYCH numbers, but he notes 16 subjects in this study: https://pubmed.ncbi.nlm.nih.gov/30256820/ The recipients of the transcranial Doppler equipment grants in the US and Canada should be adding to these numbers. At the moment, OCHOS and HYCH would qualify as rare diseases, but I bet there are thousands of us out there, just waiting for some lovely transcranial Doppler sonography and capnography testing. I also saw in a conference lecture that Dr Novak is about to publish a research study on cerebral hypoperfusion in EDS. So it’s all happening!

This article seems to explain it: https://www.atsjournals.org/doi/full/10.1513/AnnalsATS.202005-581CME Footnote 6: https://onlinelibrary.wiley.com/doi/10.1086/685054 I had thought that the experts weren’t sure yet what caused dyspnea in POTS, so I was surprised to see this. Is it wrapped up or is there still some doubt?

Ugh, I now seem to have failed candesartan (an ARB) as well. My urine output went very low. Had a blood test but it’s pretty obvious what’s going on. Seems to be a common side effect. Have stopped tablets to see whether that fixes it. Did not think it was going to be hard to find a CCB, ACE inhibitor or similar vasodilator that I could tolerate. Have sinking feeling that I may need nimodipine, which my specialist of course won’t be able to prescribe and which is not covered by govt medication scheme.

Did you see this article? It looks at 31 patients with symptomatic MALS who had surgery. It seems to be saying that the patients experienced improvement in their MALS symptoms (abdominal pain, nausea, vomiting), but not in their POTS symptoms (dizziness, syncope, chest pain, palpitations). https://pubmed.ncbi.nlm.nih.gov/33338494/ But I imagine that people with MALS and POTS who are not having the usual MALS symptoms wouldn’t be offered MALS surgery, so there won’t be any studies on that group, unfortunately.

I finally managed to get back to some exercise today. I’m afraid it felt rather joyless but I gritted my teeth and got it done. I am relieved that after my little “adventure” the other week (adverse reaction to verapamil), my BP behaved itself during and after exercise.

Does it beep at you when your blood sugar is getting too high or low?

https://www.medrxiv.org/content/10.1101/2023.10.11.23296612v1 There is not much information on this device or the company making it when I Google. The article is a pre-print. The lead author has benn involved in some interesting/relevant research if you scroll through it: https://pubmed.ncbi.nlm.nih.gov/?sort=date&term=Favilla CG&cauthor_id=37873126 I am convinced that cerebral blood flow testing is the next big thing 🙂

The University of Utah has its TCD up and running: https://healthcare.utah.edu/neurosciences/neuroradiology/transcranial-doppler The autonomic specialist who received the grant is Dr Melissa Cortez, director and founder of the autonomic physiology laboratory at the university https://healthcare.utah.edu/find-a-doctor/melissa-cortez And Johns Hopkins autonomic specialists can presumably order testing for you too: https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/neurovascular-laboratory/transcranial-doppler

The frustrating thing is, there’s a transcranial Doppler (TCD) set-up in a hospital in my near-ish capital city. All it needs is for an autonomic specialist to call the head of the testing dept, schmooze them a bit, make a case for how great measuring cerebral blood flow velocity in patients with dysautonomia would be, and direct them to Dr Novak’s publications, which seem to have a lot of technical detail. They could even contact Dr Novak. He mentors people already through a Dysautonomia International program/grant to set up TCD for autonomic testing. Sadly my specialist is not dynamic enough for any of that, although he does sometimes do unexpected things, like the time he organised albumin infusions on very little evidence. So you never know!

Looked at the website today and finally there is content! https://www.stat-health.com Unfortunately the text is reversed out, white on black, proven to be less legible to normal people, let alone us folks with brain fog. I read it with the “Reader View” on my iPad. The exciting news for me is that the company is planning to make a medical device version in the future. Hurrah!

@GasconAlex, it’s all about passing the buck, isn’t it. I have briefed my dad on it all and he is taking over running my appointments. Hope he can spur someone into some kind of action.

I have to have them a lot (got my colon removed so actually I have a sigmoidoscopy). You can explain that you are prone to severe dehydration and fainting and ask for “modified prep” and IV fluids. For example, in my case, I don’t have to take Fleet, just be on clear fluids for x time and do warm-water enemas at home. Still hard not eating but better than having burning diarrhea! I don’t have a colon, so my instructions won’t necessarily work for someone who does, but they should be able to come up with something. (Fleet is the nasty stuff they give us here to clean out the bowel. Not sure what’s in it. May be magnesium citrate. Tastes foul!)

@MaineDoug, how are you going this week? Did you get your surgery date yet?

@MikeO, thank you for the suggestion. Am taking my dad with me to appointment. Hope he can get something sorted out for me. Recent events have made me realise that my position is precarious. I am wishing now that I had stayed with my old specialist. This new one was trained by the old one, but the new one doesn’t have his own rooms, can’t phone us or contact us quickly for urgent matters, and doesn’t have any back-up. I feel I am stuck with the new one, because my old specialist now has a two-year wait time. I only changed because the new one was seeing patients in a nearby town once a month, saving me a two-hour trip to Capital City.

I’m going to see my autonomic specialist tomorrow. I have realised that it is probably beyond him to organise for me to have a transcranial Doppler ultrasound (TCD). It is available in a hospital in the capital city near me, but no-one uses it for autonomic testing yet, and I don’t think my specialist is up to the task of getting them to do it. So what kind of “normal” specialist would investigate cerebral blood flow? (By the way, my blood flow seems to be reduced even when I’m lying down, judging by my symptoms. It seems to be more to do with time of day than horizontal/vertical, although I do of course feel worse if I stand in a queue or something like that. So I don’t necessarily need it measured during a TTT.)

The talk on this gadget from the Dysautonomia International 2023 conference has been released: https://vimeo.com/859062357 I haven’t watched it yet, so I don’t know how much it differs from the talk done for Solve ME that came out a little while ago. Edit: Unfortunately the audio is a bit echo-ey. Still understandable but a bit of a strain to listen to.

@Pistol, that is very interesting to hear that you had wide pulse pressure too. I am sorry you had to go through that. With hindsight, I am sure now that I was having an idiosyncratic adverse drug reaction. It was a particularly odd one, because it was happening each evening when the dose wore off, and it became more severe when I tapered the dose. Unfortunately I had a slight relapse during an appointment with my colorectal surgeon. My face went red, I didn’t feel quite myself, and when I got home sure enough my BP was a bit high. But since then I’ve been okay. Just back to my “normal” symtoms. Argh 🙂

My dad has signed up for the conference lectures. Only $25US, although they will be released for free as the year goes on. The one from Dr Novak on cerebral hypoperfusion is the drawcard for me, and it hasn’t been released yet. Edited to add: Discovered that not all the lectures have made available for people who have registered yet. Unfortunately Dr Novak’s talks are not up yet. I was hoping to watch it before my next specialist appt.

@MikeO, I hope this will be a big help for you, and that it gets approved for permanent use.