tigerbomb

Thanks, all. Kelly, I think that makes a lot of sense. I get reflux along with the other symptoms too, but it doesn't feel like acid - just whatever I've been drinking (TMI?). It's interesting that you mention getting a good night's sleep - I was pleasantly surprised by how well I slept last night! I still was woken up by my usual 6 am gastrocalypse, but was able to fall back asleep afterwards. Usually I'm way too wired.

This might be a dumb question I'm still fairly new to POTS & gastroparesis, and I'm hoping that someone with a bit more experience might have some tips and tricks for staying hydrated when your stomach isn't emptying. I know that some people do IV saline, but is there anything less invasive? (I woke up feeling extra-symptomatic today. I've drank about 24 oz of fluids so far, and it's all just sitting in my stomach, making me look vaguely pregnant. Meanwhile, I'm still thirsty)

Huh, I've been having weird 6 am symptoms too (give or take an hour). I wake up with nausea and abdominal cramping, and have to get to the toilet ASAP (if you know what I mean...). Sometimes I'm hot and sweaty too. No headache though. It usually subsides after an hour, regardless of whether I eat or drink anything, which makes me think my 6 am symptoms are probably not dehydration or hypoglycemia. I also used to be a morning person. Ugh indeed.

Not sure. I developed POTS over the course of about 6-8 weeks last fall. Initially, I just noticed an increase in nausea, reflux, and fatigue, then increasing dizziness and anxiety. I know that EDS is associated with dysautonomia, but my previous symptoms were just GI and alcohol intolerance. So, I feel like something must have changed to make my heart get in on the fun. I have some markers of autoimmune disease, but nothing definitive. I also wonder if spending a year with under-treated chronic pain could have contributed to a hyperadrenergic state...

I know a woman with EDS who had a bad run in with HB1. She wrote a bit about it here: http://paindr.com/heroin-hydrocodone-buprenorphine-prop-aganda/#comment-2701.

Awesome. I'm definitely going to go ahead and push for the Mayo panel now.

This is very interesting to me. I started seeing an allergist/immunologist this summer for an increasing number of bizarre allergic-type reactions. I have EDS and was worried that my mast cells were misbehaving. In the course of his initial blood testing, he found signs of autoimmune disease (severely depleted C3 & C4 levels), but nothing specific. My rheumatologist was fairly certain it isn't something rheumatological, and my gastroenterologist was fairly certain it isn't something gastrointestinal. Shortly after that, I started developing an increasing number of POTS (and other autonomic) symptoms. So, now my immunologist is wondering if it could be an autoimmune autonomic (and possibly sensory) neuropathy. I think I like him because he is honest that he has no idea what is wrong with me, but he's never doubted that there's something wrong and he genuinely wants to find it. So, I've been reading up on autoimmune dysautonomia. Mayo Medical Labs offers a panel of blood tests. I haven't had a chance to really look into whether it covers the latest research or not, though. You can read about it here: http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/index.html. Any thoughts on this?

That theory sounds a bit "unconventional" to me It was once thought that POTS patients were more anxious, but current research does not support that: That being said, plenty of people have found anti-anxiety meds helpful for controlling POTS symptoms. As someone who had a pre-existing anxiety diagnosis (and had been on an SSRI for years) when I developed POTS, I am sure that these random adrenaline surges aren't helping my mental state. And my POTS is definitely worsened by both physical and mental stressors. So it's not a cut and dry relationship at all. So, IMO, anxiety can be a part of the equation, but it's not going to cause dysautonomia unless your ANS is dysfunctional to begin with. FWIW, I had my initial TTT without weaning off my various meds (though I didn't take them the morning of). I'm symptomatic regardless, so I really just needed a positive result so I could get referred to specialists and get more extensive testing. I'll probably have to go off my meds at some point, but I'm not looking forward to it either. Good luck!

This is a new symptom for me. Exciting! So far, it has happened a few times when I am extra-tachy, and went away when I lay down. I wouldn't be surprised if it was blood pressure related for me.

I've also heard criticism of the Beighton score too. It's ok for a quick screening, but isn't the whole story. Like Chaos mentioned, it ignores the large joints. Plus, women tend to be more flexible than men, and younger people are more flexible than old people - regardless of whether they have a connective tissue disorder or not. If a muscle is very tight, it can mask hypermobility in a nearby joint. I actually have several HYPOmobile areas, because my muscles are so tight and knotty from trying to support the unstable joints. Osteoarthritis is also very common among people with EDS, and it can decrease mobility too. Altruism, I'm sorry this is so confusing. I know that Dr. Byers is a top VEDS expert, but I'm not sure that he's the #1 EDS expert overall. Many other EDS experts (Dr. Grahame, Dr. Tinkle, Dr. Francomano, Dr. Lavallee, Dr. Bird, Dr. Levee, etc) consider HEDS and BJHS to be clinically indistinguishable. They also tend to say that it's underdiagnosed - not overdiagnosed. So, I might take Dr. Byer's opinion with a pinch of salt? I truly hope your VEDS test comes back negative - BTW, other EDS types can have bleeding issues too. VEDS has a much higher risk of uterine rupture though. Also, I just wanted to tout the EDNF's support community: http://www.inspire.com/groups/ehlers-danlos-national-foundation/. You do not have to be officially diagnosed to join. The people there are incredibly nice and informative, and more than happy to answer any "is this normal for EDS?" questions.

According to the Villefranche diagnostic criteria, pain would support an EDS diagnosis but is not required. There can be a wide variety in the expression of the EDS genes, even within families. So, for example, I have a lot of pain and a positive Beighton score, but my brother doesn't. However, there's a good chance he carries the EDS mutation - he's had his lung collapse spontaneously twice, he has a somewhat prolonged bleeding time, and his hands are far more flexible than mine. That being said, there's not really a reason for him to pursue an EDS diagnosis right now. I needed a diagnosis so I could get specialized PT, better pain control, and have doctors take my symptoms seriously (instead of telling me it was all just stress/depression/fibromyalgia/hypochondria/etc). And, if my brother goes on to develop potentially EDS-related problems in the future (which I sincerely hope he does not), my existing diagnosis would support his diagnosis. I know that my EDS diagnosis helped me to convince my doctors to give me a TTT in the first place, but it hasn't actually helped with treatment. For example, I saw a cardiologist who didn't think it was necessary to do further testing to check for neuropathy, autoimmune problems, hyperandrogenic stuff, etc - he just wanted to chalk the whole problem up to extra-stretchy EDS veins. I didn't really think that seemed prudent, so we parted ways. Now I'm looking for a specialist who is willing to look beyond the EDS to make sure there isn't something else going on. Good luck!

I have CEDS and POTS too. Welcome to the club! I've noticed that there's a lot more written about HEDS and dysautnomia than CEDS and dysautonomia. I don't know if it's because CEDS is less common, or if dysautonomia is genuinely more frequent in the HEDS population. Regardless, the stuff that I've read about HEDS + POTS seems to apply to me too. I'm also investigating mast cell activation due to some weird allergies, but it's a slow go. I started seeing an allergist/immunologist shortly before my POTS got bad, and had some preliminary testing done. There was no evidence of MCAS (which doesn't rule it out, of course), but my C3 and C4 complement levels are seriously depleted, which points to an autoimmune problem. At this point, my immunologist is certain that there's something wrong with my immune system, but he wants to rule out an autoimmune autonomic & sensory neuropathy first. He says I'm complicated, haha.

I was recently prescribed Mestinon too. I've been increasing the dose very gradually and just got up to 60 mg 2x/day today. So far, no difference, but I'm going to give it some time. I'm having abdominal cramps, but that's fairly normal for me

I've actually found it really helpful to have a psychologist on my treatment team. That way, when someone suggests that it's all in my head, I can say, "No it isn't. I already have a psychologist and he says that I'm anxious because I'm sick. I'm not sick because I'm anxious." In all seriousness, my therapist really has been helping me come to terms with this whole disease and disability thing. He's a good dude.

I was recently diagnosed with POTS via TTT. I requested to have my catecholamines checked at the same time, but no one at the testing facility had ever heard of that, so I just had the plain ol' TTT. It showed that when I'm upright, my heart rate oscillates between 100 and 140. My resting heart rate is around 80 (it's always been on the high side - even when I was still running, it never went below 70). My blood pressure stays more-or-less the same (though it's also higher than it used to be). My legs don't turn red or mottled or purple. I feel tremulous and anxious when I'm upright too. So, I suspect that I should be tested for hyperandrogenic POTS. I have a lot going on medically right now, and I know that the dysautonomia is only part of the puzzle. I have EDS, and something is also wrong with my immune system - might be mast-cell related, might be autoimmune. I'm a medical mystery, haha. I had an appointment with a cardiac electrophysiologist and POTS specialist last week. It was a bit weird...I'm always really turned off when a doctor will make incorrect statements about EDS, or try to second-guess my diagnosis. This guy did both, which made it hard to trust him from the start. Anyway, he was talking about the different classifications for POTS, and said that because I have EDS, mine is the secondary form, due to blood pooling in stretchy veins, rather than any type of autonomic neuropathy or hyperandrogenic POTS. I told him that I'm active in the EDS patient community, and I know quite a few people who've had the hyperandrogenic form. He told me that, if I wanted, he would repeat my TTT so we could test catecholamines. He recommended the usual - lots of water and salt, compression stockings, and exercise. He also prescribed Mestinon. He didn't seem to think that it was very important to evaluate me for other causes of POTS. However, I've read that people with hyperandrogenic POTS shouldn't have a ton of salt, and that Mestinon might be a bad idea for them. So, I'm thinking of having my TTT repeated and some additional autonomic testing done (though probably not with this guy - I really wasn't impressed). Alternately, I could just try it and see how it turns out. So, I'm wondering...have you found that knowing your type of POTS helps you find more effective treatment? Did your doctors seem to think it was important? I'd appreciate any input!