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tigerbomb

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Everything posted by tigerbomb

  1. 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.
  2. 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)
  3. 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.
  4. 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...
  5. 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.
  6. Awesome. I'm definitely going to go ahead and push for the Mayo panel now.
  7. 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?
  8. 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!
  9. 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.
  10. 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.
  11. 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!
  12. 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.
  13. 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
  14. 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.
  15. 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!
  16. Yeah, it's amazing what you can get used to. I spent the majority of my life being assured that there was nothing wrong with me, so I learned to ignore most of my physical symptoms. Now, I'm finally learning that healthy people are not constantly nauseous or in pain, and my "fast heart beat" is technically tachycardia. I'm glad you've had good luck treating! Thanks for the advice regarding the TTT. I'm going to call the office and see if they'll do the catecholamines.
  17. I've been feeling incredibly lightheaded, foggy, and fatigued lately, and it keeps getting worse. I know there's an orthostatic element to it, but I didn't think I met the criteria for postural orthostatic tachycardia syndrome, because I haven't noticed tachycardia. I have a real TTT scheduled for next Tuesday, but I was getting anxious about it (that's kinda how I roll). So, yesterday, I decided to do the poor woman's TTT to get an idea of what it would be like. I don't have a BP monitor, so I just planned to track my pulse. I laid on the couch for about 10 minutes, checking my pulse periodically. It stayed in the low 80s, which is pretty typical for me. Then, I stood up and leaned against the wall. WHOA. In the first minute, my pulse jumped to 180. In the next minute, it was up to 230. My extremities were starting to go cold (?!), so I stumbled back to the couch and sat down. I felt awful for a few hours afterwards. Now I'm thinking I probably have POTS I'll keep y'all updated on the official testing.
  18. Issie, I'm glad you found it! I think that this link might be better: http://www.mastocytosis.ca/peliterature.htm (then go to View/Download full transcript with slides PDF). I'll be happy to post it on a new thread - I think you're right that it will be of interest. I'm going to try to write up some brief notes on it first in case people don't want to slog through the whole thing Have you read the article Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options? There's a lot of overlap in information between the article and the presentation (after all, Dr. Afrin did coauthor the article), but I liked how the presentation included individual case studies. I think it's probably helpful for a doctor to see how different MCAS patients might present, especially because it underscored how you need to look for a pattern of symptoms.
  19. Hmmm...I have to say, if a medical doctor was pushing me to go for applied kinesiology, I'd run as fast as possible in the opposite direction. Years ago, a chiropractor talked me into doing it. It was very silly (and totally ineffective). To be clear, I'm not anti-alternative medicine at all, if it's supported by evidence (like acupuncture and some herbal remedies). Anyway, I'm also trying to get a mast cell workup, and the more I've read, the more complicated it seems! Yesterday, I found a presentation that Dr. Afrin gave at Women’s College Hospital in Canada last year that includes PowerPoint slides and a transcript. It's long, but it's a really good insight into how the expert thinks! I'm going to try to get my immunologist to read it. The most important thing I took away from it is that MCAS is extremely variable in presentation, and lab results are extremely variable as well. So, he looks at the levels of mast cell mediators like heparin, PGD2, and histamine. You can read it here: http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf. The part where he talks about testing for different mediators starts on page 50. Good luck!
  20. Hi Ashley, thanks so much for the suggestion! Philly to DC is about 3 hours, but when Mr. Bomb is driving, they're a bit closer Plus, we have some friends and family down there, so we could make a trip of it. And yeah...I hate the bouncing around. I mean, I'm pretty sure I know what's wrong with me and which tests I need. Unfortunately, most doctors just aren't experienced with treating EDS or MCAS, and they just want to treat me as a disparate collection of familiar symptoms, rather than addressing some unfamiliar multi-system disorder. Sigh. It's also hard to explain to the people around me why I don't just go to a doctor, get diagnosed, get treated, and get better. Anyway, thanks, and be well!
  21. Yeah, my physical therapist told me that getting my gut back under control has to be the first step too. She thinks that it's draining my energy and impeding my progress. It seems like good advice. So, I'm going to start by eating strict paleo + probiotics for a month, and then add things back/take things out from there. The husband has been warned! I drink ginger tea almost constantly, btw. It's great for my nausea and helps my extremities stay warm. Our similarities are freaky! I'll swing by the grocery store tomorrow to see if they have fresh papaya. Even if it doesn't help my stomach, at least I'll have a tasty fruit snack It was great being raised by a healthy eater because it definitely prepared me for a life of careful, restricted eating. Unfortunately, it was the low-fat 80s and my family was vegetarian, which meant a lot of whole grains, legumes, soy, gluten, etc. I didn't like greens because my mom didn't add fat or salt to them. So, I basically ate the worst possible diet for my body. I started eating much more fat and vegetables once I moved to my first appartment. In my mid 20s, I really started taking control of my health - adding fish, reducing sugar and starches, eating even more vegetables, keeping a food diary, etc. I started working out. Eventually, I eased into a paleo+dairy diet and started eating poultry and grass-fed red meat. I guess it's time to take the next step, haha.
  22. Hey turtle! I also find that my joint laxity changes over time. In my case, it cycles with my hormonal cycles. I'm active in an online EDS support community, and many of the female members report similar changes. If you're looking for more information on the Hypermobility type, I'd recommend reading this: http://www.ncbi.nlm.nih.gov/books/NBK1279/. It's very comprehensive! I was diagnosed with EDS last spring, and have crossover symptoms of the hypermobility and classic types. Here is how it shows up in me: Hypermobility: 5/9 Beighton score. I can do the thumb thing, the pinky thing, and the bending over thing. My brother and dad have elbows that bend back past 10 degrees, but I don't. I'm very flexible in some places, but I also have some areas that are very stiff, especially in my upper back and thighs. In those areas, my muscles have become knotty and hypertonic to stabilize the local joints. I get a lot of muscle cramps too. So, I can't even come close to doing a 180 degree split, but I can do the human pretzel thing. My shoulder blades are usually frozen, but I can apply sunscreen to my entire back anyway. Other signs are that I can touch my nose with my tongue and my thumbs bend backwards. Instability: My joints are weak, and prone to injury and inflammation. I had repeated sprained ankles, feet, and knees as a kid. My sacroiliac joint is loose, so my pelvis is usually tilted to the front on one side. One of my ankles occasionally grinds, so I wear tight high top sneakers a lot of the time. Sometimes a shoulder will go out slightly and pinch a nerve, which causes me to lose feeling in my hands. I've only had one full dislocation though, and that was a pinky. I put it back on my own, haha. I had a couple bulging disks by the time I was in my late 20s. The laxity in my hands makes it impossible for me to hold a pencil properly. Pain: I had excruciating "growing pains" as a kid. My back and neck have hurt constantly since I was a teenager. I used to experience awful delayed-onset muscle soreness when I worked out. Now, I'm a bit sore most of the time. It's worse around my period, in the cold, and when the weather changes. It doesn't respond to most medications. Weird skin: Not too delicate, but kind of translucent. I don't usually scar badly, but I have a ton of stretchmarks and a few "cigarette paper" scars. My skin feels soft and squishy and is a bit loose in places. It's only slightly stretchier than normal. Other stuff that supported my diagnosis: Bad eyesight (nearsighted with astigmatism), droopy eyelids, fatigue, allergies, stomach pain, nausea, "IBS, narrow palate, frequent cavities, anxiety, "floppy-looking" interatrial septum (on echocardiogram), clumsy, prolonged clotting time, single transverse palmar crease, sandal gap toe deformity. My family has a history of inner organ fragility (hernias, spontaneous pneumothorax, etc) but I've been lucky so far. So, that's me! I want to mention that most rheumatologists aren't too EDS savvy. Many will diagnose people with benign joint hypermobility syndrome, even though the current thinking by EDS experts is that JHS and EDS Hypermobility are the same thing. Other times, they'll claim that EDS can't cause chronic pain/migraines/stomach problems/whatever, even though it absolutely can. A lot of people with EDS (including me) ultimately wind up at a geneticist for diagnosis, though very few of them provide ongoing care. There aren't nearly enough EDS experts out there. Good luck! Please let me know if there are any particular resources or information you're looking for - I might be able to point you in the right direction.
  23. Oh, thanks. I haven't had a CDSA, but was H Pilori negative last itme I was tested. It makes sense to get worked up for everything else too. Growing up, my mom was kind of a health food nut. She gave me papaya enzyme tablets when I had stomach aches (which was often, haha), but I never found them too helpful. Do you know if fresh papaya might be better? I'll look into the coconut kefir. I'm a big fan of coconut in general, and imagine it would be delicious blended with some mango. I've been meaning to do a dairy-elimination trial for a while. It will be easier to do now than over the holiday season, so might as well get started asap! It's also a good time to tighten up the rest of my diet - cut back on even the natural sugars, reduce omega-6 intake, avoid lectins, increrase micronutrients, etc. At the very least I'll probably drop a few pounds and get back in the tight jeans I'm sorry to hear you suffered for all those years - I really hope that in the future, more doctors will know to look for this stuff.
  24. Thanks so much, everyone! I truly appreciate your warm welcome and helpful suggestions. ophelialit: Oh man...and here I was, thinking you had the secret answer I can definitely relate to the relief of finally having a diagnosis. My EDS diagnosis is truly one of the best things that ever happened to me - I spent most of my life wondering why I was such a weirdo, only to learn that I am actually very typical for someone with EDS. Honestly, just knowing that this isn't all in my head or somehow my fault has been incredibly good for my mental health. In terms of doctors, I've been looking through the forum archives, and it looks like there may be a dysautonomia-savvy neurologist and cardiologist in my area, so I think I know where I'll start. I've already ruled out a lot of the diseases you mentioned (except for giant brain tumor ), so it sounds like I'm off to a good start. Bloom County is awesome, btw. Christy: Have you found any helpful strategies to figure out if a doctor has knowledge of dysautonomia? In the past, I've found doctors who say they have knowledge of EDS, but when I finally see them, it turns out that their knowledge is 20 years out of date, or just wrong. Dizzysillyak: Finding an integrative/functional doc sounds like a superb idea. I take an integrative approach to managing this, so it would probably make sense to find a doctor who is on the same page I should have mentioned what I'm already doing to treat this...I've been on a mostly-Paleo diet for over two years now (I still eat some dairy in the form of organic yogurt and kefir, because they settle my stomach when it's cranky), and I agree that it can be very helpful! I also eat a ton of mango, because it tastes great and makes my gut happy (no pineapple, though, because I'm VIOLENTLY allergic, haha). Unfortunately, my symptoms seem to always follow a cycle: I'll experience a flare up, then find a way to manage it (through medication, diet, lifestyle, etc). Then, I'll feel better for a year or two until my symptoms flare again, and I have to add another management tool. So, my life has gradually become more and more restricted over time. It's frustrating, but so it goes!
  25. Hi all! I am new to this forum, and would truly appreciate your knowledge and expertise. I'm a 30 year old woman, currently living in Philadelphia. I have spent most of my life being vaguely sickly in one way or another. About a year ago, I came across a description of Ehlers-Danlos Syndrome, and realized that it fit me perfectly. It was confirmed by a geneticist this spring. I am finally receiving appropriate treatment for my pain and joint instability (which is awesome). As I've learned more about EDS and networked with other EDS patients, I've realized that my other health issues could be explained by dysautonomia and/or mast cell activation. In August, I began seeing an allergist/immunologist. I've been having a lot of allergic-type reactions, but my triggers don't show up on an IgE test. He doesn't know what is wrong with me, but at least he admits it ;)The last time I saw him, I brought up the possibility of a mast cell disorder, expecially MCAS. While he isn't personally familiar with it, at least he acknowledges that it exists. So, he sent me for some bloodwork (not sure if it's the right bloodwork), and I'm currently awaiting results. I've suspected that I have dysautonomia (but not necessarily POTS) for a while, but didn't pursue diagnosis because my joint issues seemed more urgent. Typically, my symptoms cycled in severity with my hormonal cycle, but are rarely debilitating. This month, however, has been much worse than usual, with hardly any good days. It's hard for me to accept, but I know I have to focus on getting this under control. Here are symptoms that I think might suggest a diagnosis of dysautonomia and/or mast cell disease: Dizziness Nausea Vomiting (rarely) Diarrhea/frequent pooping Stomach pain/cramping Stomach bloating Fatigue (mostly managed with Wellbutrin, Lexapro, and diet) "Brain fog" (mostly managed with Wellbutrin) Hot flashes Chills Motion sickness Tunnel vision/seeing black if I get up quickly from squatting or bending over (not sitting though) Chronic sinusitis and rhinitis Hypoglycemia (managed very effectively with low-carb diet) Increasing number of allergies/intolerances to foods (especially fruits) Allergies/intolerances to meds New allergies/intolerances to weird stuff (wearing earings, contact lenses, etc) Alcohol intolerance Dermatitis triggered by stress and/or heat Intermittent weakness Canker sores Shakiness (occasional) ...and I'm sure I'm leaving something out, but you get the picture I'm not sure if I've ever fainted. My blood pressure has also been normal whenever I've had it measured, but I've always been sitting down. I need help figuring out what my next steps are. How do I attack this in the most efficient way possible? I would like to be evaluated for dysautonomia, but I don't know who to see for that. A cardiologist? A neurologist? Should I bring up the mast cell thing, or will it make me seem batty? Also, do you know which diseases they typically want to rule out before a dysautonomia diagnosis? If there are tests that I will need, I can work with either my PCP or my rheumatologist to start scheduling them now. Many thanks, and be well!
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