Michelle Sawicki

Hi everyone,

One thing we all can do to raise awareness of dysautonomia is to fill out a "Request to Buy" form for Dr. Grubb's "The Fainting Phenomenon" book at out local library. The book is geared toward patients and has the basics on many types of dysautonomia. Most libraries will order books you request...I do it for my patrons all the time. Getting this book into libraries will ensure that people looking up fainting will learn about dysautonomia.

And the best part is that we can all do this for free!

Michelle

I would recommend "The Fainting Phenomenon" before "Syncope: mechanisms and management."

The Fainting Phenomenon was a lot easier to understand than his syncope book, which seemed more technical and geared toward medical professionals.

Michelle

Hmmm...good points you brought up there, Katherine. I'm going to run another poll for people who have POTS without EDS and see if we get comparable results.

Michelle

We've added a page to our website to track Member Appreciation Donations. We've set the goal of $500. and have recieved 10% of that already. Yay!

Watch as they grow: http://www.dinet.org/logo.htm

I'd like to express my sincerest thanks to Alexia (worththewords) for coming up with the idea of Member Appreciation Donations. She has been working hard and brainstorming ideas to raise funds for DINET. I can't thank her enough for her efforts!

Michelle

Thanks so much for posting this, Alexia! Every little bit does help. We stay in business thanks to our member's donations, but truthfully only about 3% of our members donate. With only 3 out of every 100 people who benefit from our services giving back, we can only do the bare minimum and are constantly running fundraisers in an effort to stay afloat. It doesn't seem like much, but a $10. donation from every member would add up quick and really help us out.

Michelle

Maybe Sally. She made it as a general comment referring to EDS, but perhaps she just didn't explain what she meant well enough.

Michelle

Yep, I was confused by what she said too, because I'd always heard and read the opposite. My geneticist did tell me there can be spontaneous mutations, which makes sense...but multiple kids with a spontaneous mutation doesn't make sense. Hmmm...

Michelle

Nina, I always thought what you'd just said was true and a geneticist told me it was as well, but I just went to an EDS lecture given by a geneticist who has a special interest in EDS and she told me that families can have multiple children with EDS without either parent showing signs. I was really surprised, as I'd always been told the opposite, but this woman really seemed to know what she was talking about.

Michelle

Thanks for your answers, guys! You are confirming my suspicions. I have met some people with POTS & EDS who looked much younger than they actually were. The last gal I met was 27, and she honestly looked around 12-15.

Thanks for your compliments, Emily! Lord knows I try...

Michelle

Just curious....

Hi there,

What about this doctor...?

Dr. William Cheshire

Mayo Clinic

Neurology

4500 San Pablo Rd.

Jacksonville, FL 32224

904-953-2498

He's on our physician list. There's also a resident there named Dr. Svetlana Blitshteyn who works with us. She is very interested in dysautonomia and has a great attitude as well.

Michelle

Yay! Congratulations, and thanks for letting us know. I love to hear good stories.

Michelle

Hi Dayna,

You made me laugh with the comment about your husband.

I wear my compression hose to work only and have to take them off the minute I get home. They can be annoying, but they really do help keep my blood pressure up.

Good luck!

Michelle

Nina, he'll be in my prayers.

Michelle

Your poetry is moving. I really enjoy it. You truly have a gift. Thank you for posting this.

Michelle

First, make sure the doc on the physician list treats what you are seeking help for. There are abbreviations of the treated disorders next to most of the docs name. If they aren't there, call the clinic to see if they treat what you have (or think you have). We've had people go to the wrong type of doc because they didn't check those abbreviations or ask first.

I've seen Dr. Russell at U of M. My sister has seen Felix Rogers. Dr. Grubb focuses solely on dysautonomia and publishes much more work in the field than either of the two.

Michelle

So cool, Melissa! He sounds like a really great guy.

Michelle

Hi there,

My sister and I have both been diagnosed with classical EDS. I "snap, crackle & pop" quite a lot.

Michelle

Thanks for the replies.

Mary - I would have the twilight anesthesia...sorry if I wasn't clear there. I did previously have a bad experience with demerol though....they gave it to me after I had my son -years before I had POTS- and my bp dropped really low. I don't know how low it went, but I know they gave me something to try to bring it back up and told me I couldn't leave the hospital until they got it up...so it must have been pretty low. I'll mention that to the anesthesiologist.

Jan, thanks for giving such a detailed explanation. I really appreciate your sharing your experience with me.

Thanks again, guys! You're the greatest.

Michelle

Hi Dayna,

Please PM me with the name & state of the doctor you saw. We only want people on the list who are really interested in dysatuonomia.

Thanks!

Michelle

Thanks, everyone, for sharing your experiences. I really appreciate it! I have the doctor's appointment next week and hopefully she won't want to scope, but it looks like things are going in that direction.

Michelle

Hope you guys have fun!

Michelle

Hi everyone,

I may be having my first endoscopy soon and wanted to know how the rest of you faired with it in regards to POTS? Did the anesthesia affect your symptoms one way or the other? I've been put under completely and had bradycardia, but I know the twilight sleep they use for endoscopies is a bit different. Did you have to take any precautions?

Thanks for any info,

Michelle

I'm thinking of you too. You know I care about you and am aways just a phone call away if you need to talk.

Michelle

I also believe our bodies go through phases and can react differently to medications depending on where we are at the time. I do worry about your going off your meds to treat bipolar disorder, though. I do hope you are doing this under the care of a psychiatrist.

Michelle