Sleep experiment

[Sarah Tee]

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.

[RecipeForDisaster]

Good luck! I really want to try a vasodilator for my HYCH, but my BP is so low that no one wants me to try it. I don’t have a particular time of day that is worse, but I sleep very poorly.

[Sarah Tee]

@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.

[Sarah Tee]

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.

[Sarah Tee]

@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.

[RecipeForDisaster]

4 hours ago, Sarah Tee said:

@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’ve talked with some of my doctors about it, and got no one on board. Same for octreotide, unfortunately. I do well with IV fluids (they even help my appetite and they relieve my after eating issues), but only for a few days afterwards. At least I have IVIG for the autoimmunity again. 

[Sarah Tee]

@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?

[Sarah Tee]

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]

2 hours ago, Sarah Tee said:

@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?

Unfortunately, I was told it might take 2 years for me to know if my autonomic symptoms would be helped by IVIG. Then the pharmacy error caused me to miss 2 infusions, so I just restarted and only got a year and a half before a break from January-April. So far, it hasn’t helped those symptoms, but we are hopeful.

 

People do occasionally get SC fluids, but not 2L a day like I need. I have less loose skin than most people, too. A lot of people get immune globulin SC, but I can’t even do that.

 

We need those studies so badly! A better way to treat postprandial symptoms would be super. I just need blood flow!

[Sarah Tee]

@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 🙂

[RecipeForDisaster]

1 hour ago, Sarah Tee said:

@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 🙂

Sorry for the confusion - I did IVIG for a year and a half, and then the pharmacy caused me to miss 2 infusions from January to now. So not quite as bad as 2 years (but bad enough, as my infusion reactions were worse than ever after the gap).

 

Wouldn’t that be a great legacy? I’d open a one stop shopping clinic where you could leave with a diagnosis and treatment plan, equipment, education, and meds. Imagine that?!

[Sarah Tee]

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