anna Posted June 24, 2011 Report Share Posted June 24, 2011 Ok what do you guys think about this ladies theory on EDSers with POTS.?! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 24, 2011 Report Share Posted June 24, 2011 I do believe she could have a case. We have discussed "neck" causes here before that could contribute to head/neck/body circulation issues.You can read how many of us have neck issues. As you can see in my first post, I alluded to the CCSVI theory, as I had been reading up on the MS boards a couple of years back. They actually were the first set of patients to get their jugular veins "coiled" open, but as a few people had later issues, I think they revised their surgical methods.Her theory sounds very plausible, especially when she mentioned the issue with lying down all night could cause increased head pressure for lack of drainage. I have these two issues when I get up in the morning:1. My left mouth is slightly droopy, and gets better as the day goes on(I mentioned that in my thread above)2. My vision is really blurry when I first get up, and slowly gets better over a few hours. I can barely read the tv screen early in the morning, but by noon, not a problem. And, my glucose is normal or lowish. I always thought, in theory, maybe I had increased b/p in my head causing my eyes to feel like they want to pop out of my skull. But, I've just been ignoring it.I believe we talked a little on cranial fluid pressure, but can't find it. It is hard to find old posts past 2010. Anyway, if this is actually a true possibility, I would think it might explain why alot of us find we have low aldosterone. We have been asking forever, "why does our body think we have too much fluid?" and "why does our body want to get rid of our fluid?". In other words, if we have increased pressure in our head, then our body must think we have high blood pressure, and thus tells our system to do what it needs to do to lower our blood pressure. It would be nice if they would do an actual clinical trial that could do imaging of the brain and really look for the abnormalities.Once again, to even get a doctor to check this theory out would be impossible. Quote Link to comment Share on other sites More sharing options...
lissy Posted June 24, 2011 Report Share Posted June 24, 2011 SueThat blurry vision in the morning actually just happend to me a few days ago and scared me so bad it was better the next day but just want to chime in on that.I see an eye doc monday so I'll see what he says if anything... Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted June 25, 2011 Report Share Posted June 25, 2011 Interesting - hadn't come across this before. She's fun to listen to Curious is craniosacral therapy has any help to offer... Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted June 25, 2011 Report Share Posted June 25, 2011 Does anyone know if EDS can show up later in life. I am hypermobile. Doctors are surprised that i can touch my toes at age 62. A rheumatologist recently found great interest in looking at my knuckles although he didn''t say anything.My skin is mottled and often red and my eyes and mouth are very dry. Doctors are not sure if it is Sjogren's because most of the blood work is negatative except for a positive ANA. With everything that I've read and know about EDS most of the time it is diagnosed in childhood or adolescence or in a young adult. Still looking for reasons that are causing my dysautonomia. What do you think?I do feel horrible in the morning and do have neck issues (some cervical stenosis). Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 25, 2011 Report Share Posted June 25, 2011 Wait what are we talking about - is there an article or a link to this Dr's work? I am very interested in any info relating to the neck and POTS. This is a big one on my "suspected causes" list. Quote Link to comment Share on other sites More sharing options...
skiberthoud Posted June 25, 2011 Report Share Posted June 25, 2011 i wasn't sure what exactly the original post was about so I googled her and found her on youtube as well as elsewhere... Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 25, 2011 Report Share Posted June 25, 2011 BTW, here is a link to the paper that Anna was talking about:http://prettyill.com/downloads/Driscoll_Theory_EDS_-_Online2.pdf Quote Link to comment Share on other sites More sharing options...
sugartwin Posted June 25, 2011 Report Share Posted June 25, 2011 Does anyone know if EDS can show up later in life.Absolutely. EDS often comes a-calling later in life. My mother wasn't diagnosed until she was in her early 50s. I was almost 30, hardly a child or young adult. To be fair, I can't say I hadn't been having symptoms on and off all my life. The signs were just ignored or glossed over, thanks to general ignorance of EDS and its main secondary syndrome, dysautonomia. I really want Dr. Driscoll to be right, because someone needs to figure out what is causing the multiple dysautonomias in EDS in order to focus the treatment. However, I had a sinking feeling as I watched the video because I couldn't relate to the symptoms she described except on the most superficial of levels. I wasn't a floppy baby; I walked early and hit my developmental milestones ahead of schedule. The symptoms she mentions don't match my own. I'm not going to be silly and say her theory is wrong because it doesn't apply to me. However, it doesn't apply to me, which makes me sad more than anything because it means that any treatment that comes of it will likely not work for me. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 26, 2011 Report Share Posted June 26, 2011 She really explains why it hurts so much to lie down and be supine, also...how we present with chiari-like symptoms. My neuro really thought my symptoms sounded like chiari. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted June 26, 2011 Report Share Posted June 26, 2011 Just to add to sugartwin's comment, I have similar reservations but for the opposite reason. I wasn't a floppy baby either, but I can relate to many of the symptoms she describes - for months I was unable to lie on my back, I had terrible pressure at the back of my skull, had a weird buzzing sound when I moved my eyes from side to side. All of these have resolved for me with MCAD/S treatment so I now wonder if they were related to mast cell dysfunction rather than pressure on my brain (or somehow if there was pressure, it was an MCAS symptom). I am left with OI, fatigue, pain...not sure what to think of all this. Quote Link to comment Share on other sites More sharing options...
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