David Smith

15 hours ago, tigger2512 said:

it says no  attachment available.

 

Hopefully this works 🙏

My Dr used the attached NASA Lean Test to diagnose my POTS. It's like a poor man's Tilt Table Test that any one can do if they can measure you blood pressure and pulse. My Mother In Law found a machine to measure blood pressure and pulse at a second hand store. God bless you. 

NASA-Lean-Test-Instructions.pdf

Yes, I have constant tinnitus. I normally only notice it when I'm in a quiet environment, like when I'm lieing in bed. 

On 2/1/2021 at 10:46 PM, RecipeForDisaster said:

The head of my bed is elevated a few inches (plastic risers) and I do sleep my my side. I always have my legs crossed or supported so my knees are high to my belly or something. It’s automatic for me, too. I do try to squeeze my muscles when I’m about to pass out, but it doesn’t always work and/or I can’t always do it.

Hi everyone. I've just being diagnosed with POTS after a NASA Lean Test. From the little I've learned about POTS so far it seem like that I am having trouble getting blood to the top half of me when I'm upright. I have read raising the bed head a bit may be helpful. Could someone please explain how this works, as I would have thought you'd want to raise your feet in bed to get blood flow to the brain. Thanks! 

Thanks for the suggestion @endless_august I haven't had any testicular pain since Dec, but I'll keep your idea in mind!

Hi. I am wondering if anyone knows if dysautonomia can cause testicular pain? 

My Dr arranged for me to get some ultrasounds done which showed Nutcracker Syndrome, which he said would be causing my reoccurring testicle pain. However, afterwards I was referred to see a Vascular Surgeon who also did some ultrasounds and it showed no Nutcracker Syndrome/compression of the renal vein. 

I seem to get testicular pain after sitting for a couple of hours or more, like after travelling in the car for 3 hours to visit my Mum. I've had 2 courses of antibiotics to treat some testicular infection that showed up for Epidymo-Orchitis, but the antibiotics didn't really help much and I'm still getting testicular pain on and off. 

I'm of to see an Urologist on Feb 10, but I'd like to know if my newly diagnosed Dysautonomia could be the cause of my testicular pain. Thanks if you can help! 

On 3/22/2012 at 2:35 PM, Rachel said:

I am excited to announce that DINET's full length POTS documentary is now available on YouTube.

We are not able to take new DVD orders at this time, but we do hope to make the documentary available on DVD again later on this year. Meanwhile, feel free to watch on YouTube and pass the link on to anyone who may appreciate it.

 

Thank you for making this video, as it's helped me feel I am normal for someone with Dysautonomia. It's interesting that even though I've being diagnosed with Dysautonomia but not POTS I still have most of the symptoms of POTS. 

Well done on putting this together as it was a lot of work for someone with Dysautonomia!

Silent night is such a classic. Even though I sing hymns and modern Christian songs at church regularly, there is something about Christmas carols like Silent Night that deeply move me, often to tears of gratitude.

It's very special doing an item with your family too - a memory you can all cherish. 

On 12/19/2020 at 9:22 PM, Pistol said:

@Scout dysautonomia does not pose a greater risk from COVID - we simply may be sicker due to flare symptoms. So there should not be any complications per se - it will just cause a full on flare. Hope your test is negative and your symptoms will be brief 🥰

@PistolThank you @pistol for reassuring those of us with Dysautonomia that we don't have a greater risk from COVID-19 👍

Since being sick in 2015 it seems like my immune system is fairly normal in terms of I haven't caught the flu or a cold any more than average. I did catch a virus recently that left my wife (who got it 1st) and I with vertigo, but I recovered quicker than her!