MightyMouse

it was particularly hard for me to pull myself together enough to exercise after I'd had 2 surgeries in one year; I wasn't able to work or take care of myself without help. It took physical therapy and slow, but steady building of time exercising...as simple as walking (which works well for me b/c with the muscles constantly contracting, i'm not as dizzy as exercises where you stand in one place). 5 years later, I was able to start yoga, and most days that I go, I'm NOT feeling up to it, but I do it anyway. Sometimes I end up sitting, crouching, or balled up in child's pose for way more of the class than I'd have wanted, but it's at least SOMETHING. And on the days when I'm able to do the whole class, I feel SOOooooOOOOOOOoooo much like i've accomplished something important.

Nina

I've had one in 2006; bilaterally. I had an arterial rupture 7 days after the reduction on the right side, which had to be repaired and redone. You need to **** your vascular risks if you have hyprmobility (which was my issue).

Niina

I know two others who are using it with good results as well; however, they are both in the UK.

If he has EDS then he could possibly have POTS just like you. I have a genetic collagen defect as well (not EDS but hypermobile like EDS)...and my first full out faint happened at age 4 in a very hot auditorium.

All of those are genetic screenings done via a blood test (then wait at least a month), but with porphyria, I believe that there is a simpler test, which is to place urine collected from you during an attack in sunlight--it turns colors in UV light.

http://urology.stanf...rmal_urine.html

I was seen by a genetic specialist at a children's hospital and my gene tests were drawn there.

For most folks with POTS/NCS, no exercise is NOT dangerous. Dr. Grubb is a strong proponent of swimming as a good way to get started. He also suggested a recumbent bike, which I used for a long time, but recently donated to a friend b/c I can do yoga now. It took me years of work to get myself there.

Nina

Norepinephrine Transporter Deficiency, which is genetic, causes the symptoms of POTS. Linda Smith, founder of NDRF, has this type. http://www.nejm.org/doi/full/10.1056/NEJM200002243420803?HITS=20&hits=20&FIRSTINDEX=20&searchid=QID_NOT_SET&stored_search=&tdate=9%2F30%2F2001&journalcode=nejm&RESULTFORMAT=&fdate=1%2F1%2F1975&sortspec=PUBDATE_SORTDATE+desc+Score+desc&maxtoshow=&fulltext=norepinepherine+transporter&

Also, my type is genetic, caused by a collagen and bone growth defect on FGFR3, aka “fibroblast growth factor receptor 3.”

http://ghr.nlm.nih.gov/condition/hypochondroplasia

the same gene is implicated in Marfans, which can mimic POTS/NCS symptoms too, and achondroplasia (dwarfism). Folks with damage to FGFR3 can have hypermobility just like folks with the EDS.

another is Porphyrias.

http://www.nlm.nih.gov/medlineplus/ency/article/001208.htm

Those are the ones I know of...and all but the FGFR3 are listed in the "causes" section on the main dinet website.

Nina

I don't think there's any formal data on remission rate, or how long they last... I can tell you I know a few people who got better and symptoms never came back... and still others for whom the symptoms go away for a few months at a time and then come back. I've personally never really experienced a remission, but I have had cycles of feeling somewhat better and other cycles of somewhat worse or much worse. My cycles last a few months at a time, with the exception of one really bad year about 15 years ago, where I was probably experiencing a Mastocytosis flare--I developed so many allergies I couldn't keep up with the list, and I was hospitlaized multiple times for asthma, allergies, pneumonia, sinus and ear infections.

Nina

I'm so glad you were finally able to get help for your son Ernie. That's great news.

FYI, here's the normal distribution for blood types in the United States (I know we have members elsewhere, but the large majority are in the US):

http://bloodcenter.stanford.edu/about_blood/blood_types.html

Poll set up here:

As requested, here's a poll for blood type

I'll do it for you.

I'm up and about for most of the day 8 to 10 hours. Sometimes more sometimes less...and when it's hot, much less.

All references on the DINET site are listed at the bottom of each page. So, what you're looking for is listed, and you can see from the way it's listed, that it's either his verbal report at the conference, or was in handout materials presented, rather than an article.

Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia

Research Foundation Patient Conference. Minneapolis, Minnesota.

Yogini, Legs up the wall is one of my favorites too. My low back is out and that's one of the only poses that feels good right now--all the furniture moving upstairs in prep for the hurricane really killed me today (we're expecting to get the winds soon, been raining all afternoon).

I also like supported fish b/c I have constant spasms in my chest and upper back, and that helps to allow them to open a bit. Eagle also helps my upper back too. I sometimes struggle with downward dog, so I alter to puppy instead. I've found all the core work and isometric movements really help keep my bp better than other types of exercise. Most challenging poses for me are in vinyasas (for those unfamiliar, that just means careful transitions from move to move to move in a sequence, usually repeated a few times in a row). Most teachers run a vinyasa that involves bending at waist, doing some poses down on floor, then back to bending at waist then upright--If I'm going to get dizzy it's, of course, during the transitions from floor to upright. If the studio isn't cold enough or even if it's cold but doesn't have good airflow, it makes it even harder. Those are the times I'm on my knees instead of standing up.

And I WAS a very athletic younger person--ran cross country team all 4 years of HS, as well as track, was an avid hiker and camper, but can't do that any longer. Loved gymnastics and was really good, just didn't have the money for it. If there was any grieving for my former life, it was that I am less able to be active.

Nina

I take yoga classes at a studio usually 3 times or more a week. The classes range from 45 minute lunchtime classes, to intense 1.5 hour classes. My tolerance just depends on the day. Sometimes, I need to take rest breaks often, and other times, I can get through the entire class doing my maximum expression of the pose. I've found that, overall, it's improved my general health...and some poses are perfect for potsies...like chair. And, if you're in your mountain pose, and you're doing the muscle contractions correctly in your legs, you can help keep your bp stable. Sometimes when I'm having a dizzy day, I drop onto my knees instead of standing so that I can avoid the big bp changes that can happen when you go from folded over to standing.

And then there are days when my body wont comply and I have to cancel my class. Just follow the first Yama of Yoga: A Himsa... no harm.

Low blood volume cannot really be diagnosed by blood pressure. The definitive test for low blood volume is done by a blood test, usually done in the Nuclear Medicine department at a hospital--they draw blood, they radiotag your blood, reinfuse you with it, and then do another draw to calculate. You can have a precipitous drop in BP without low blood volume if you happen to have a collagen problem where your veins and arteries allow too much blood to pool when you're upright (you can have that WITH low blood volume too--I do).

Nina

worked perfectly for several years for me. Went off it for some testing and when I tried to restart, it shot my bp way too high, even on miniscule doses.

I received my definitive diagnosis from Dr. Grubb in Toledo OH

Yes, there are many causes, however, sometimes it's easy to rule out big parts of the the list by the doctor taking a good history. It took a long, long time for me, but it's pretty clear now that I have a bone growth and collagen defect--collagen is the glue that holds all your body structures together, including veins and arteries...mine are too stretchy.

Rachel, I appreciate you taking the time to post the reminder... for those of you who are newer here, please DO only use the "ADD REPLY" at the very bottom of the page when responding to a post. If you use the "reply" button located in the body of the page, it then quotes the entire post--this is a forum glitch that we cannot change b/c it's part of the software.

Why are the quotes a problem? Well, for one thing, it makes the pages hard to read, especially for those of use who are light sensitive, and/or have limited attention time--it adds to the time needed to get through a topic. And, secondly, it takes up memory space on the the site--for info that already exists as the original post or topic.

Thank you for taking the time to follow Sunfish's instructions on the quirks of the forum and how to navigate. It makes the moderator and administrator workload a little easier (and we're all volunteers, with POTS or related disorders just like you, and have limited energy reserves ourselves).

Nina

no known testing for EDS hypermobile type (aka type 3)

symptomatic since birth, major exacerbation of symptoms at age 10 diagnosed at age 32

Caffeine is one of the standard treatments to help bring up BP, especially when it's naturally lower in the mornings. The only reason it could be dangerous is if one ingested too much or if you have a history of being very sensitive to stimulants. It's a good question for your doctor.

Nina