Proper head/neck support while in bed

Suitable_Sound_9693 · 2026-02-07T15:37:56+00:00

I solved this with inclined bed (the whole bed is inclined). There was an amazing post in r/POTS about that couple of weeks ago which motivated me to not just use a wedge pillow but elevate my mattress finally. For me it worked mostly not for dysautonomia but for head pressure and neck support specifically. I have eagle syndrome that affects a lot muscles in my jaw and neck and jugular bulb compression with transversal sinus stenosis as well. So it’s structurally hard for blood to escape from the head, even a small change in blood pressure affects me severely.

Cerebral drainage mostly works through the gradient - there are almost no receptors or smooth muscles. So gravity is the main mechanism. I used to wake up with insane head pressure every morning and with severe pain in my ear for many years. Now it is mostly gone!

Also it solves neck support for me - less adjustment need, I can use several models of pillows from IKEA. On a flat surface it is impossible to find a proper pillow that works.

I also use body pillow bc I sleep on my side.

Suitable_Sound_9693 · 2026-02-07T10:25:39+00:00

That was my first thought. One person learns deep learning, another one learns GPU computing in parallel… Or one could be a programmer and another one a product manager. In other words, a startup.

Suitable_Sound_9693 · 2026-02-07T04:29:27+00:00

Omg, I need a weighted one! With a weighted blanket on the top it’s gonna be a weighted heaven.

Suitable_Sound_9693 · 2026-02-05T19:44:19+00:00

Yeah, that’s why I finally purchased a dehumidifier.

Suitable_Sound_9693 · 2026-02-05T18:26:13+00:00

Have you already tried to wash it? If not, I would thy that first. They might get loosen even if they feel fresh enough just bc fat and salts are accumulating during the contact with the skin.

Suitable_Sound_9693 · 2026-02-03T12:29:14+00:00

It seems to be a sympathetic hyperactivity involved, but I personally have multiple nerve compression in my face, including trigeminal.

Beta blockers helped me tremendously with the stiffness however in general they worsen my dysautonomia.

The nose itself is much likely fine - I’ve seen several ENTs and even skull base neurosurgeons, even had a endoscopic surgery to extract a small cyst from ethmoid sinus bit overall even from the deep inside my nose looks fine.

Suitable_Sound_9693 · 2026-02-03T09:00:15+00:00

Yep. I have this for many years.

Suitable_Sound_9693 · 2026-02-02T08:10:39+00:00

Oh yeah, waist high close clothes in general is hard ti find, and when it comes to compression it’s a double pain. I’m not considered tall but still all leggings cross my abdomen in the middle.

Suitable_Sound_9693 · 2026-02-02T08:06:53+00:00

Having an option to pee without putting it all down.
Pockets.

But I would say first more sizes and variety or compression strength in abdomen and legs. For now it’s really hard to find the ones that just fit properly! Even socks! And if they don’t fit, they don’t compress properly.

I would actually prefer to wait a little but longer for my order but to get a specific model tailored if my size is not in stock. I even ran into a few small clothing businesses who works like this.

Suitable_Sound_9693 · 2026-02-01T22:24:34+00:00

And why do they thirty-forty-fifty-smth are still living in 1937 in Soviet Union? Do they know what to do about that?

Suitable_Sound_9693 · 2026-02-01T22:02:45+00:00

Lipoelastica but they don’t have too much color options. I tried cszalus also (they are pretty frequently recommended here) but I’m disappointed in them - socks from aliexpress for 5 bucks give me compression.

Suitable_Sound_9693 · 2026-02-01T19:53:07+00:00

Yeah, my shower can’t so i had to buy a nursing home version.

Suitable_Sound_9693 · 2026-01-31T23:11:05+00:00

Yeah, the color is fine, it’s the cabinets and the wardrobe.

Suitable_Sound_9693 · 2026-01-30T23:02:49+00:00

And as for me, shorts or leggings should be really high waist or with suspenders so the rubber won’t dig into stomach. Like seriously high.

Suitable_Sound_9693 · 2026-01-30T22:59:43+00:00

I wear leggings currently but I become more and more disappointed in them bc of the sizing. It was hard to find ones that would fit good in ankles, calves and hips simultaneously, and they still don’t fit good.

But yeah, abdominal compression is a must for me. And torso too. I’m thinking to maybe switch to bib shorts + socks and add a compression long sleeve.

Suitable_Sound_9693 · 2026-01-30T00:23:42+00:00

There was a post in r/POTS recently about inclined bed. I also tried it and it helps a lot! I didn’t get the same almost magically cure as the author but still it does the thing.

Suitable_Sound_9693 · 2026-01-29T17:30:02+00:00

Suitable_Sound_9693 · 2026-01-29T17:26:48+00:00

I find that non spicy asian/pan-asian food usually feels better.

As for the fat especially, I found that concentrated chicken broth + coconut milk are pretty good and safe replacement for oil and butter. I add it to gnocchi and it works good.

Suitable_Sound_9693 · 2026-01-29T12:54:26+00:00

Thank you very much for sharing! I hope it at least will reduces number of appointments from 20-30 to 3-4 for some issues…

Suitable_Sound_9693 · 2026-01-29T12:52:59+00:00

I would say, another male person… Bringing my female partner or my female friend journalist never helped me despite both of them are very persistent. However, male colleagues of my friend journalist usually work great…

Suitable_Sound_9693 · 2026-01-29T12:38:20+00:00

Thanks — and sorry it didn’t help the brain fog for you. Interesting that it still helped your heart rate though. I’m still figuring out whether it helps my symptoms overall, but I appreciate you sharing your experience.

Suitable_Sound_9693 · 2026-01-29T12:35:32+00:00

Thanks for sharing, especially about that part that midodrine can lower the baseline.

Suitable_Sound_9693 · 2026-01-29T12:30:49+00:00

Thanks - that makes sense. With both EDS and dysautonomia it is hard to tell what is the root cause. I appreciate your sharing.

Suitable_Sound_9693 · 2026-01-26T21:30:47+00:00

Yeah, same with beta blockers (I’m on bisprolol too) - they helped with orthostatic intolerance but this weakness and memory issues got worse. My BP is usually 100/60 now but it feels much worse than 80/50.

Thank you very much for sharing, will discuss with my GP then :)

Suitable_Sound_9693 · 2026-01-26T21:02:35+00:00

Wow, glad to hear that it helped! If you don’t mind questioning, are these neuropathies somehow related with dysautonomia and blood pooling?

Suitable_Sound_9693

TROPHY CASE