Young People With Dysautonomia

I’m looking for POTS patients age 14-29 to participate in a short online survey about the causes and co-morbid conditions of POTS. Please do NOT participate if you already participated in my “brain fog” study (you have already answered these questions).

The survey takes about 10 minutes to complete and all answers are anonymous. I may be presenting the results of this survey at a prestigious national conference this year and would love to bring more awareness about the problems POTSies face to the top researchers there.

Quote is from the author of the study.

This is from the co-author of the study we posted earlier - if you didn’t participate in that, you should answer the survey questions! Ps the author is a senior at Johns Hopkins and a fellow POTSy working with a top Dysautonomia doctor, so basically she’s a total badass and you should definitely take a few minutes to answer these questions!

yogapantsgirl:

[Image description: YPG is on the floor laughing. A woman in hospital scrubs says “All I asked was if you were taking any medications.”

The caption reads: “Chronic illness amusements: New people at your doctor’s office.”]

Am I on any medications? Oh bless your heart!

dysautonomiaprison:

Postural Tachycardia Syndrome Perspectives for Patients

New Article: “Some patients with POTS can be severely limited by the disorder. However, many patients with POTS will slowly improve over time, and the majority will respond to a combination of hydration, reconditioning, and medication.” The Date Column of the New Article in the Dysautonomia Prison Article Spreadsheet is annotated with ‘Apr’ and highlighted in blue.

chronicillnesscat:

[Image: 6-piece blue colored background with a Siamese cat. Text reads: “Can swallow over five large pills at once. No big deal”]

Five, six, seven…

#chronicillnesslife

Hey Dys kids, do you do PT?

Hello lovelies, I have a question for you all! How many of you out there see a physical therapist and/or do PT exercises on a regular basis? I ask because doing PT has helped me a lot with pain, and I was wondering if others had similar experiences. (Others with chronic illness should feel free to weigh in as well - let’s see where our experiences overlap!)

-maddy

The Lame Dame: Are you disabled? Would you be interested in participating in a research project? It's really easy, I promise! →

thisiswhatkarinthinks:

Hi everyone! I am a senior in college studying communication studies I also have a disability. For my senior research project I am doing a study on disability, identity, self-esteem, and body esteem. I need 100 people with any range of disability and disability…

This sounds super cool - anyone interested?

(via hellomynameismaddy)

ofmonsters-andmeg-deactivated20 Asks:

Hey, does heat affect you a lot? That's my biggest trigger and I was wondering if you knew if compression stockings would help in the heat. I haven't worn them in about a year, and it seems crazy to put more layers on in heat, but POTS is crazy! Thanks!

youngpeoplewithdysautonomia Said:

Heat does affect me! Exclamation point because it affects me a lot, not because I’m happy about it!

In the warmer months I wear these Spanx. You can’t get a prescription for them, unfortunately, but they work really well for me. If I’m wearing shorts or a shorter dress, I’ll roll them up so they don’t show. You sacrifice some coverage, but it’s a good way to get a bit of compression (particularly in the stomach area) without boiling over.

-maddy

Update on the brain fog survey

I messaged Amanda Ross, who was conducting the brain fog survey we were bugging you all about earlier. She did end up getting enough participants - over 100 people - and she submitted an abstract to a conference. Very cool!

-maddy

buryyourselfinwords Asks:

Do you have any recommendations for compression leggings? My dr said they might help when I'm feeling especially symptomatic, but I can't seem to find any that I like. I'm looking for something that I could basically wear as "pants". Any suggestions?

youngpeoplewithdysautonomia Said:

Compression stockings are SO HELPFUL. I am in love with them. I wear them every day, actually, because they are so darn effective in combating blood pooling. I know I’ve answered questions about them before, but I can’t seem to find those posts at the moment (edit: found them! I extol the glory of Spanx here and include a basic compression stocking run-down in this post).

My favorite long stocking are from Jobst (I usually get the UltraSheer and wear them under pants or instead of tights, but if you want to wear them as pants, the Opaque ones might be better). I would recommend getting the pantyhose, because then you’ll get some stomach coverage (and your stomach is a prime place for blood to pool). As for compression level, I like the 30-40mmHg, but they are the world’s largest pain in the ass to put on. If wrestling with your stockings every day sounds like something that might prevent you from ever wearing them, you may want to start with the 20-30mmHg compression stockings. Since Jobst is a medical brand, you can get a prescription for them (which is nice because they’re quite expensive).

Also, these deserve a shout-out. You probably can’t wear them as pants because they’re very pantyhose-y, but they are super cute.

-maddy

HELP NEEDED from fellow Dysautonomia/POTS patients:

jennily:

Hi everyone!

My name is Jennie, I’m from Baltimore, Maryland, and I’ve had POTS for a little over 5 years now. I’m starting a project with my university in North Carolina and with my cardiology team/clinic in Virginia about POTS and dysautonomia. Here is where I need the help of anyone who has a few minutes:

As a patient living with POTS myself I know one of the biggest struggles for me is explaining to someone exactly what I have and that no, it’s not laziness keeping me in bed, but fear of passing out. I want to spread awareness and create a social online community for those with this syndrome to talk, share their stories, get information from doctors (since there are so few who treat POTS and other dysautonomia disorders), nutrition plans, exercise plans, and information for parents/friends who just need a little help understanding what we go through.

If you could do anything for the POTS community what would you do? What is missing from your personal fight with this disease? Awareness? Financial assistance for medication/doctors visits/tests? Proper care and treatment? Please share what you would like to see from a POTS/dysautonomia website/non-profit organization that you haven’t seen before or that you feel you could use to assist in living a better life with this condition.

You can either message me on tumblr (ask box), reply to this post, or you can contact me through email at jhook3@elon.edu (just put POTS/dysautonomia something of the like in the subject line!) and share your ideas or concerns with me! Thank you to any and all who take the time to read this and reply. I look forward to hearing your story!

Gonna end this with a question so that way it lets people answer right on the post: thoughts?

This sounds like a fantastic project! More organized support systems (forums, meet-ups) and better access to information (spreadsheets with common Dys meds and what they’re used for, lists of physical therapists who know how to work with POTS patients, etc.) would really help. I know there are two Dysautonomia organizations just getting off the ground, and I don’t know what else they have planned, but I haven’t seen a lot of raising awareness yet and that would be quite valuable. Pushing for more research would also be incredibly useful, as would dissipating the research that’s already out there. But those are just my initial thoughts. What does everyone else think?

-Maddy