New to this forum - hoping to learn a lot from you all!

HI, Im Tracey, a new member to your forum. Im glad to find a place where I can share and learn from others. Im a 42 yr old white female - 5'10 - 140lbs , I live in Lexington, KY.

What I know:
I have Dysautonomia/POTS/ EDS-JH (I think type 3 as of right now).
I have an appt with Dr Brad Tinkle (in Nov) in Cincinnati where I will hope to learn more about my type if its more than type 3.
Do you have any other suggestions for Dr's with EDS as a speciality? Just trying to learn the best way to figure everything out the best I can- especially if I could have type 4 (I dont have many of the signs of type 4 but I know that doesnt always mean anything).
Im a lean manufacturing consultant, I have my own business and travel almost weekly to different clients. Im finding this is getting more and more difficult to do with my symptoms. Sometimes its depressing to be stuck in a body that hinders you from doing the simple things. Frustrating as Im sure most of you experience.

My worst symptoms:
Brain-ears-eyes connection - visual sensory perception overload - dizziness - disequalibrium. (Do any of you have this?) I figure its a connective tissue thing somehow.
POTS symptoms - Digestion, BP flucuations
Anxiety - due to all of this stuff
Actually Joint Pain I can tolerate and live with - Im flexible like Gumby on outside (less the older Ive gotten) - just wonder how bad the inside is.

I had a spont. pnemothorax in 1997 (I did have an allergetic cough for 4 mos prior to the collaspe). They did a pleuradesis (sp). No issues since. I was 28 at the time.

I hope to network and learn what I can here. Thanks for listening. I wish I could have made it to the conference this week.!! Thanks Tracey

Report post

4 replies. Join the discussion

Hi TraceyR; welcome to our corner of the Internet! Usually by now you'd have gotten a string of responses but most people are going to or at the Baltimore EDS conference. Sounds like you've got Brad Tinkle's book, which we like and refer to lots, too. My daughter had so many sensitivity troubles that she was actually diagnosed with SID (sensory integration disorder) at school by an OT. I think it is just part of EDS; our skin is sensitive and so are our other sensory organs. I'd like to hear more about the lung collapse; did they see it on x-rays? Is it usually found post-allergy cough?
You are not alone with this! Keep posting, Stephanie

Report post

HI Stephanie,
Yea I wish I could have went to the conference. I hope they all come back with some good info. In regard to my collasped lung. I had a cough for 3-4 months that was just (to me) an allergy cough to something I was working around. The Dr's believe that the cough weakened the very top part of my lung, they called it a bleb I think. Im very tall and thin.... I was even thinner at the time. They said that sometimes when you have grow spurts as a kid like I did that your lung might have small weak points. (This was when I had no idea I had Ehlers Danlos (genetically). My lung just collasped at the very top up by the collar bone area. It felt like I was having a heart attack. Anyway it would never reattach itself, it collasped 3 more times, the 3rd time was bad, my empty lung was laying on my heart so they tubed me and reinflated- that was awful by the way :).... They ended up doing the surgery scrubbing the walls to scar the lining so my lung would reattach. Ive never had an issue since and now if I get a cough I do NOT let it go, especially now that I know I have EDS. To answer your question they did see it on the Xray. They ended up cutting out a 2 cm piece at the very top since it was weak. I hope that answers your questions.
So as far as the sensory integration (mine see to be sounds, movement- so eyes, ears, brain)... is there anything to help? Sometimes I take Xanax to settle the vestibular part down. Thanks Stephanie. Tracey

Report post

Thanks for the lung explanation, it was clear and quite a help. My 15 yo had strange lung/chest pain but fine x-rays; you added two things (growth spurt, yes she just shot up 2"), and allergies, yes.Somehow, I never realized the lungs have to grow too. Duh. We feel better knowing it is yet another time when the collagen production can't keep up; just we need to know so we can slow down and live gently. So, I told her do not neglect your allergy meds and take cough suppressants if you get a cold, and grow more slowly!! No, I' d love it if she were tall like you, what a blessing.

As for the SID, there are lots of books on this, but I don't think it applies to us. For kids, what the OT wanted my girl to do, was expose her to more and more sensory input. Like, make her carry heavy loads of groceries and rub her skin with rough towels. I think your use of xanax is more sensible, as we EDSers just can't toughen up, it doesn't work, we get long term damage. Before we got the HEDS (type 3 EDS), she had what we called "Diagnosis Of the Day" Syndrome, where each doctor would insist all the previous doctors were wrong, and give her a new label. We really didn't even accept the HEDS until we read the blue Tinkle book and she was in about every chapter plus my family had all the stuff, too. So, luckily, I just read all the Sensory Integration books and then added it to my DODS pile, ignored the advice.

There should be lots of new info on the site from the conference and if you post again next week, you'll get lots better info than I can give. Thanks!! Stephanie

Report post

Hey Stephanie,
I did learn something interesting yesterday. Ive been studying Scotopic Sensitivity Syndrome (Irlen Syndrome) .. I found a diagnostician in Lexington and saw here yesterday. She spent an hour and an half with me asking questions and tests with lights and my eyes etc. She said I was off the charts. This falls under Sensory processing dysfunction. She said that many people respond to special colored filtered lenses. Im going back Sun to find my colors and get some lenses made. She said there is a high rate of response for many people. Im hopeful. Let ya know... T

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support EDNF

Help the Ehlers-Danlos National Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Ehlers-Danlos National Foundation

Discussion topics

Community leaders