Victoria Posted March 17, 2011 Report Share Posted March 17, 2011 I was diagnosed with Ehlers Danlos at Mayo. I was poking around the forum and it looks like POTS may be common in people with EDS? Is this true? If so, I'm assuming Dr. Grubb would want that information when I fax my records to him?Thanks bunches. Quote Link to comment Share on other sites More sharing options...
issie Posted March 17, 2011 Report Share Posted March 17, 2011 Soooooo true, it can be the cause of POTS. Definite need for that info. Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 17, 2011 Author Report Share Posted March 17, 2011 Thank you issie! I don't want to bombard his office with records, but I don't want to leave out important ones, either. I didn't know EDS could cause POTS???? Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted March 17, 2011 Report Share Posted March 17, 2011 There is a lot of info about the connection at the Ehlers Danlos National Foundation (www.ednf.org). Julie and I have been meeting more and more people who have HDCTs like EDS, hyperadrenergic POTS and a mast cell disorder. I don't think it's a simple as EDS causes POTS, although there are some theories about hypermobility leading to mechanical problems that could in theory cause autonomic dysfunction.At this point I'd say that EDS is frequently associated with POTS, but the causes haven't been worked out yet. I suspect that they'll find out mast cells play a role somehow. Quote Link to comment Share on other sites More sharing options...
issie Posted March 17, 2011 Report Share Posted March 17, 2011 That's why POTS is a syndrome - there are so many variables and things connected and associated. There's not just one thing, but EDS can be one of the biggies because of the laxity of the veins and the way circulation is impared. Quote Link to comment Share on other sites More sharing options...
rach73 Posted March 17, 2011 Report Share Posted March 17, 2011 HiBlair Grubb in his book The fainting Phenonmenon states that 60-80% of people with POTS have a joint hypermobility / EDS. Book can be purchased on Amazon for around £16-£20 sterling.I would have liked to have been more accurate but my copy is currently with my sisters GP 56 miles away. Good news is that my sister is being referred to my consultant here for a TTT. Otherwise I would have copied the complete quote.Rach Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 18, 2011 Author Report Share Posted March 18, 2011 Thanks for the tip on the book! I'll start saving so I get get a copy. 60-80% definitely a lot of POTS peeps with hypermobility. Quote Link to comment Share on other sites More sharing options...
comfortzone Posted March 19, 2011 Report Share Posted March 19, 2011 The books I g0 to - to recommend about EDS and associated symptoms relating to other body systems including the ANS are these - On Amazon you can find books by Dr. Brad Tinkle - the head of the EDS Clinic at Cincinnati Childrens Hospital - He has two - One is blue and white covered a bit cheaper and for around 12 bucks you get a lot of info - then a sequel or more expanded version was written a year ago or so - called the Joint Hypermobility Handbook - both good primers about all the body systems and their behaviour often encountered when you have generalized joint hypermobility. A third book is by Hakim - Greer and one other of the prominent UK docs I believe - The title is Hypermobility...Fibromyalgia and Chronic Pain. This book is truly geared to all of those that are really into the latest research and science that goes behind the multitude of symptoms frequently encountered by Hypermobile people - it also talks a bit about the mystery of Fibromyalgia - though not nearly as much as the hypermobility issue. I find it fanscinating to read - and pick it up kind of slowly to savor a chapter now and again...There's also another thing found in this group of patients - neck issues.... such as intermittant cervical cord compression - which I believe can cause chronic pain and perhaps dysautonomia stuff - so many things are intermingled I forget how to articulate what I just learned - but Chiari Malformation issues and things with the neck because we bend greater amounts can be problematic ....I agree - it's important to pass along this important issue - connective tissue - collagen is everywhere - so it's no surprise to have connections with other body systems...And on the EDNF website you can go to the resources page and scroll down on the left to find the "handouts" from the 2010 conference in Baltimore - they've gone paperless - so all the stuff you get by going - is on that web page...... This years is still upcoming - and some docs will be seeing patients at the conference to help people out... Quote Link to comment Share on other sites More sharing options...
Victoria Posted March 19, 2011 Author Report Share Posted March 19, 2011 Thank you so much for the great info. I do have some cervical cord compression, but it's supposedly benign. It wouldn't explain having symptoms for this long, though. Hmmmmm. I do have an awfully long neck and it's prone to injury. I'm going to check out the EDNF website tomorrow when I'm stronger. And I'm going to go book hunting next pay day. Knowledge is power.Thanks so much for the enlightenment and passing on the good reads. I truly appreciate your help. Quote Link to comment Share on other sites More sharing options...
comfortzone Posted March 19, 2011 Report Share Posted March 19, 2011 That neck thing is my big quagmire or 'odd duck' thing... Where EDS savvy neurosurgeon says to have a 3 level fusion - and other top notch Mayo folks say, 'Wha??? is that guy talking about?' - And don't hesitate to mention the study that found all these people wandering around with serious looking MRI's with absolutely no symptomatology at all... Leaning toward - we don't believe there is central canal stenosis to block things - you are fine.... it just reads bad on MRI - to the other guy saying 'it's OBVIOUS what your issue is... blah blah blah' - and it's HE.... double toothpicks living in the middle with symptoms I'd rather not have. If my cord is mildly flattened on MRI - a regular lying supine MRI - and if my neck is hypermobile - wouldn't it then make sense that I have cervical cord compression that worsens in extension? Certainly I'm not signing up for any surgeries - that would be the end of me - but I'd like to make an educated decision that way - so that if the one guy is correct I could be a quad if I don't have surgery -- well could someone please prove it before I seriously consider a dangerous surgery - with EDS - that would forever inhibit my ability to move my neck?Your post was the first I ever heard of "benign cord compression" - never heard of that - but that might be what Mayo is trying to say about mine. However if you have symptoms of pain etc...body wide - how benign is it really? The Obstructive sleep apnea, cord compression, hypermobility, and other things put you at a greater risk of Fibromyalgia I read - but really who the heck needs yet another 'mystery' diagnosis tagged on? Fatigue - yes ... but how many other things cause that - even simple pain! I don't have that fatigue that 'never goes away no matter yet' - I have the sudden hit a wall fatigue - and now I find my blood pressure is crashed at those times - makes sense why I feel so much better if I lie down for half an hour or more...Good luck with everything... Patience is truly a virtue in all of this - but even moreso is counting our blessings in a day so this focus doesn't have life pass us by... Quote Link to comment Share on other sites More sharing options...
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