Sarah Tee

It’s now nine months since I found out that I probably have OCHOS, and I’m still waiting for my Doppler ultrasound test date.

I have had to put my immune treatments on hold so they won’t interfere with the test. My LDN prescription is sitting at the pharmacy when it could be helping me.

The delay in the scheduling is because my specialist has to be present at the test, even though he knows less about it than I do and doesn’t even normally do NASA lean tests himself.

I am really tempted to tell him to stick it and ask for my money back (I know that’s not possible, but he’s wasted so many $300 appointments with his procrastinating).

Argh!

I’m ashamed of myself for not knowing until recently that Sir Roger Bannister (of the four-minue mile) was a pioneering autonomic specialist in London.

His obituary

My mum and dad were living in London when this article was written, and although my mum worked as an agency nurse, not in the NHS, it gives me a little flutter to think of it.

“An Assessment of Various Methods of Treatment of Orthostatic Hypotension”

Interesting to note that the treatments are still familar to us now, especially the albumin infusion (!), and that they were able to measure blood volume. (The case studies are a little sad to read, as some of the patients were very ill, although some improve as well.)

@RecipeForDisaster, that sounds like an excellent idea. People would be queueing around the block!

Article about using wrinkly fingers as an autonomic test:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2892617/

The authors just call it skin wrinkling, so there must not be an obscure medical name for it.

Funnily enough, in this test the fingers of subjects with autonomic function failed to wrinkle after immersion in warm water. Healthy subjects’ fingers got very wrinkly.

I am sure there are posts here about the opposite – fingers going wrinkly without being immersed in water. It must be dysfunctional in both directions.

I wonder whether one of the researchers on QI has a connection with dysautonomia. In the “Quizmas” episode, Sandi Toksvig poses a question about an old dialect word, quobbles.

It turns out to refer to the pruney wrinkles you get on your fingertips when you soak them in water, but she goes on to mention the autonomic nervous system, and how quobbles may be used in diagnosing autonomic dysfunction.

Not something many doctors know! (I’m sure our specialists know it.)

Does anyone know the medical term for pruney fingers? It was also featured on Operation Ouch, but I don’t remember them giving a medical term for it.

@RecipeForDisaster, I’m sorry that your treatment was delayed by an error. Two years is a long time to wait. I am slightly ashamed of myself now for complaining about six months for hydroxychloroquine (Plaquenil).

I get a lottery ticket now and then, with the grand plan of funding certain autonomic research or equipment. If it’s equipment, I’ll get a brass plaque on it with my name. Or maybe a dedication to DINET 🙂

Oh, but the team at Vanderbilt that is looking at postprandial symptoms might come up with a more specific treatment than octreotide. (One that doesn’t have nasty effects on the gallbladder.) Will be some years though.

@RecipeForDisaster, bother.

I forgot you have IVIg for your SFN. Can you remind me, does it help with your HYCH symptoms?

(Every time I search here, I seem set off the “please wait 10 seconds” thingie multiple times.)

I do wish that big study in Canada into albumin for POTS had gone ahead. And octreotide seems to have faded into history, which is a shame.

I wonder whether there will ever be a simpler way for people to get fluids. I have a small interest in wildlife rescue, and I noticed that they always give the animals subcutaneous fluids, and it’s very quick and straightforward to do. I looked it up for humans, but it doesn’t seem to be used very much. Maybe it’s to do with the loose skin of the animals?

@RecipeForDisaster, just a thought, but do you think you could get a trial of IV albumin? As well as boosting blood volume, it has immune-modulating properties. It only helped me for a short time, but it seems to help some people for a week.

And I saw in another post you have bad symptoms after eating. What about an octreotide pump? Ther are some case studies for this in POTS.

I think I will be giving up my experiment. It had pros and cons.

Sleeping through my “slump time” seemed to work. And sleeping in two segments did not do any harm. I felt just as rested with two lots of 4 hours as sleeping 8 hours all together.

But being awake at odd hours in the night and early in the morning wasn’t too good, especially since it’s turned cold and daylight saving ended. I’d have to be running the heating and lights a lot more than usual.

And I had a disinclination to change out of my PJs when I knew I’d be going back to bed soon.

I had previously tried reversing day and night in order to take advantage of feeling better at night, but that was too lonely.

So I guess I’ll go back to normal sleeping hours and try something else to deal with my afternoon slump.

I found the episode – it’s series 10, episode 2.

The diagnosis scene was a bit rushed – the patient didn’t get a ten-minute stand test! – but I agree with @Sushi’s B+ grade.

Fair enough, @MikeO.

One day there may be something similar that can be ordered by your doctor, like a Holter monitor, without the patient having to make a purchase.

Here you can see the monitor being worn by someone with POTS. (Click to enlarge.) The green top line shows cerebral blood flow trend, and the bottom blue line shows heart rate. Not sure what the black dots stand for.

There are more graphs, with commentary, in the newsletter.

Two weeks have passed with no news on the date for my test. The stress of waiting to hear *whether* I can have it done has now given way to the stress of waiting to hear *when* I can have it done.

Argh.

Also I fear what ceasing all medications for two weeks prior is going to do to me and my household.

The latest newsletter has some info on release times later this year.

March 2024 newsletter

It also shows a couple of cerebral blood flow trend graphs. Boo hoo. It really brought it home to me how much I need this.

See the heading “Stat data snippet from Shivani”.

(My condition, like a few others, only shows up in cerebral blood flow. So right now I have nothing to measure, and neither does my doctor.)

I’m going to be trying this (cautiously) to see whether it does anything to counteract my abnormal cerebral vasoconstriction. It works in a different way to the other things I’m currently taking.

Will report back after I’ve given it a week.

@MarePar, best to phone and ask what the prep for the test is and which medications you can or can’t take.

@LHP, that’s frustrating. Can you contact the person who referred you? Or perhaps there is a patient liaison officer or similar who can help.

Well, my appointment went better than I could have imagined. I am to continue with HCQ, and my rheumatologist is going to try me on low-dose naltrexone (LDN) as well.

Not only that, he is going to email Dr Novak and ask him if he has any of his autoimmune-type OCHOS patients on immune treatments, and if he can suggest anything.

Woo hoo!

It’s my review appointment today after three months of HCQ. I have seen improvements in pain in my hands on weight-bearing activity. I am not sure whether there have been any improvements in my OI symptoms, but I am going to fudge it a bit and say there have been because I don’t think three months is a long-enough trial.

Also, the three months were over our hot summer, and I recently discovered I had had some kind kind of reflux (probably from other medication) which muddies the waters. I have only sorted out the reflux this last fortnight. Additionally I have spent the last few months wrestling with my specialist to order my Doppler scan, which has had my stress levels really high.

So it has done some good, maybe not where I was hoping, but it’s been hard to tell and I need to try another three months at least.

Also, I am going to be rather brave and ask the rheumatologist about low-dose naltrexone (LDN). He specifically said he did not want me to try anything that compromises the immune system, which is why he won’t be prescribing anything stronger than HCQ. Well, LDN does not compromise the immune system, and is fairly safe to try, so I will try to use his own words to convince him.

Apparently LDN can be taken with HCQ. Fingers crossed!

Could someone who is party to the updates/Facebook group remind me of when the company expects to start sending out the device?

I noticed that hypermobility and EDS got a brief but fairly accurate mention on QI (British comedy panel show). There was even a hypermobile person in the audience.

They did dwell on the “party tricks” aspect at first but also mentioned that some people get joint pain and other complications.

@RecipeForDisaster, I’m sorry you haven’t been able to try a vasodilator. I am pushing my ever-reluctant specialist to get me a bottle of nimodipine under compassionate access to see whether that would work better for me.

It is selective for cerebral arteries, but I believe it still lowers blood pressure overall.

I think I remember you had been asking about it too.

There seems to be a good amount of research now documenting hypocapnia in dysautonomia. It would be nice to see them moving to trials for medications or other interventions.

I found out Australians can order ketotifen legally from Japan, where tablets are OTC, so on the outside chance that mast cells are involved in my cerebral vasodilation I am planning to try those too. I have what seem to be ordinary allergies anyway, but haven’t had much success with the OTC hay fever medications available in Australia, so even if the ketotifen will help with that I’d be happy.

I have been able to feel a bit better while taking vasodilators for OCHOS.

(I have the auto-immune type that causes abnormal vasodilation of the cerebral arterioles, i.e. low blood flow to the brain due to rogue antibodies.)

However, my worst time of the day continues to be a truly horrible afternoon slump, when I feel very low, from about 2pm–6pm. I am unable to take a higher dose of vasodilators to fix this due to side effects. And I am also not allowed to take steroids, which would also fix this.

So I’ve decided to attempt to sleep through it.

I’m switching to a biphasic (two-part) sleep pattern of 2am–6am and 2pm–6pm. Biphasic sleep was the norm in medieval times, although people went to bed in the early evening, woke up for a couple of hours around midnight, then went back to sleep.

It also lets me take advantage of the fact that I often feel good from from 11pm–2am.

I don’t know what will happen. It has worked today, but my “slump time” may move and catch up with me. And messing with your sleep times is not a decision to take lightly.

It’s a little inconvenient but, as I don’t work or have other fixed commitments, I’m thinking of it as a long siesta.

I will report back on how it goes in a few weeks.

I heard this once, but have not managed to verify it, but apparently when British tv programs show medical conditions the portrayal is supposed to be factually correct. It’s part of the broadcasting code of conduct or somesuch.

So having POTS on a British program is sort of significant.