Sarah Tee

@MaineDoug, well, I will make a note not to visit Maine in spring 🙂 I hope the bugs and mud pass quickly into a nice summer!

It’s lovely to hear that you can cook for your wife now. I agree, the little things in life are wonderful when you get back to them after illness.

I have a door I need to finish painting and am looking forward to it so much!

@MaineDoug, that’s wonderful news. Enjoy your walks! I am sure Maine in Spring is lovely.

@MaineDoug, good for you! I have a plan to change to a different specialist. I am going to see him in conjunction with the current one, and, if he is good, I can ditch the current one. If not, I’ll keep looking.

How is your recovery going?

I was wondering whether you can wear the ear device overnight …

The answer is yes, although I don’t think it’s required for data collection.

I suspect I would find it uncomfortable, but I’m sure it would be fine for most people.

Just for anyone else who might be thinking of trying nimodipine, there is another medication that works on cerebral blood flow and is possibly easier to access called nicorandil. (Note that it is not easily available in the US or Canada, but is available in Australia, New Zealand, the UK and Japan.)

I don’t know whether it would be as effective as nimodipine. I will add more information when I can (waiting to discuss with specialist).

Never mind, I worked it out. It was Dr Murray Esler at the Alfred Hospital, just in case anyone else in Australia is ever wondering.

(Sounds like a Cluedo answer!)

Here is one page that you can show your doctor:

https://www.alfredhealth.org.au/services/hp/hypertension-clinic/

On 7/11/2006 at 8:56 PM, ramakentesh said:

most certainly - in Australia its part of the diagnostic tests - the carotid arteries are tested for blood volume using an ultra sound and most reduce between 20-40% on standing or tilting duirng test caused by excessive venous dilation due to impaired norepinephrine reuptake.

@ramakentesh, I would dearly love to know where or by whom you had this done. I thought nobody had done it in Australia outside one study!

Thanks, @Jyoti. They are gradually improving. Probably another two weeks and then back to walking, not running!

The old lack of executive function struck again.

I am going through another period in which I feel pretty good around midnight. I tried marching on the spot, but it’s quite a different action from normal walking, so I thought I would try jogging or running on the spot instead.

Neglected to warm up properly, and kept going for several sessions even after my knees started hurting. Now have very sore knees and can’t do any walking, let alone running.

And yet I would advise anyone else taking up a new form of exercise to warm up thoroughly beforehand and stop immediately if they felt pain.

Knees should recover in a few weeks. But in the meantime I’ll no doubt be doing lots of foolish things I will regret because I do know better!

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.