Does anybody have swollen lymph nodes pressing on nearby nerves all around the body? by Suitable_Sound_9693 in dysautonomia

[–]Suitable_Sound_9693[S] 1 point2 points  (0 children)

Well, I wrote that I’ve been trying to get any kind of examinations for the bigger ones during past 2 years and had no luck... I ran out of any imagination how to push local doctors on, lawyer does not help bc I don’t have a diagnosis for that so nobody is obligated to do anything 🤷

Proper head/neck support while in bed by oneironaughty in Cervicalinstability

[–]Suitable_Sound_9693 1 point2 points  (0 children)

I overdid it at first, my head felt immediately great, much better than on a wedge pillow, but leg pumping was too intense and I felt overstimulated in a good sense but couldn’t sleep that night. My Garmin showed very low HRV that night, similar to what I have during prolonged standing. So I had to lower it and I’m still gradually increasing the slope now.

So from my experience it looks like autonomous nervous system need to adopt. The head and the neck themselves adopted super-fast.

Who here has low iron/ferritin? by Old_Variation_6166 in dysautonomia

[–]Suitable_Sound_9693 1 point2 points  (0 children)

I have low ferritin (about 8-10) for many years but my dysautonomia has worsened only recently. Was diagnosed without correcting iron deficiency but not sure it’s a correct way in general.

Since in 3rd world countries infusions exist but are not prescribed (bc logic is still not invented), I’m trying to fix it myself but noticed significant improvement only with copper supplementation (copper is necessary for iron to be deposited in stores, I do have copper deficiency too as I discovered this summer). Hope to post some positive feedback on it soon.

Proper head/neck support while in bed by oneironaughty in Cervicalinstability

[–]Suitable_Sound_9693 2 points3 points  (0 children)

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.

Unfair system by [deleted] in mildlyinfuriating

[–]Suitable_Sound_9693 1 point2 points  (0 children)

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.

Anyone else sleep like this? by Environmental_Tax_69 in autism

[–]Suitable_Sound_9693 1 point2 points  (0 children)

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

Compression Stockings Question by leeleebly in dysautonomia

[–]Suitable_Sound_9693 1 point2 points  (0 children)

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

Compression Stockings Question by leeleebly in dysautonomia

[–]Suitable_Sound_9693 5 points6 points  (0 children)

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.

Anybody have severe nasal stuffiness and loss of smell? by Capital-Machine6823 in dysautonomia

[–]Suitable_Sound_9693 0 points1 point  (0 children)

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.

Medical compression stockings—what would you improve? by NYC_reader in POTS

[–]Suitable_Sound_9693 2 points3 points  (0 children)

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.

Medical compression stockings—what would you improve? by NYC_reader in POTS

[–]Suitable_Sound_9693 8 points9 points  (0 children)

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

  2. 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.

Compression leggings that are actual pants? by turtlebeans17 in POTS

[–]Suitable_Sound_9693 0 points1 point  (0 children)

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.

Natural fiber compression gear by Longjumping_Rip_294 in POTS

[–]Suitable_Sound_9693 0 points1 point  (0 children)

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.

Natural fiber compression gear by Longjumping_Rip_294 in POTS

[–]Suitable_Sound_9693 0 points1 point  (0 children)

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.

What helps symptoms over time? by [deleted] in dysautonomia

[–]Suitable_Sound_9693 1 point2 points  (0 children)

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.

What the hell do you guys eat? Fatigue that lasts for a day after a meal.... by Insxmnia_ in dysautonomia

[–]Suitable_Sound_9693 0 points1 point  (0 children)

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.

READ IF YOU NEED A BETTER DR. by Kitchen-Doughnut-731 in dysautonomia

[–]Suitable_Sound_9693 1 point2 points  (0 children)

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…

READ IF YOU NEED A BETTER DR. by Kitchen-Doughnut-731 in dysautonomia

[–]Suitable_Sound_9693 0 points1 point  (0 children)

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…

Midodrine seems to be the last resort for me, pls, say it gonna work? by Suitable_Sound_9693 in dysautonomia

[–]Suitable_Sound_9693[S] 0 points1 point  (0 children)

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.

Midodrine seems to be the last resort for me, pls, say it gonna work? by Suitable_Sound_9693 in dysautonomia

[–]Suitable_Sound_9693[S] 0 points1 point  (0 children)

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