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I too, avoid surgery whenever possible. I don't heal well, and thanks to the EDS I scar really badly. That said, don't worry about "scaring off" your doctors. Your doctors need to have your full health history to avoid a catastrophic outcome. Any surgery that requires general anesthesia carries significant risk, and they can not help you make the best decision about risk/benefit ratio without all of the facts. They most certainly will be willing to do it, especially if they know beforehand that your tachycardia is related to dysautonomia, and not an underlying heart condition. If they are too scared, it may be that you don't have the right doctor, or have to consider more carefully the risks of the operation. Good luck! Sandy

I have had the rash for gluten, HD, and I can tell you from firsthand experience it is the worst itch you will have ever known. I literally clawed hunks of skin off my buttocks (the rash usually appears in a bilateral manner, so equal on both sides, of your buttocks, legs and/or arms) before it healed. It responds to NOTHING, I tried everything, benadryl, creams (antibiotic, fungal, antihistamine), you name it. So for what it is worth, I don't think you have the rash associated with celiac. That being said, however, food allergies are different from celiac, and a wheat allergy could cause a reaction, but should respond to antihistamines. From a dysautonomia perspective, I think anything is possible, given how poorly they understand how it all works! Sandy

Stress is one of the major triggers for dysautonomia. Dr. Grubb has told me (pretty much every visit!) that controlling my stress level is going to be key to being as healthy as possible. Try some breathing exercises, (you can find a bunch online) they are particularly helpful for calming down when you don't have the time/energy to exercise or meditate. Hope this helps! Sandy

Lette- I am soooo right there with you! I and my doctors have long suspected that I have EDS type III, the hypermobile form. But my hysterectomy in January raised new concerns, my surgeon had a heck of a time removing the uterus because it was falling apart. So I am currently waiting for testing as well. (Also I have family history of a string of early death due to "heart issues" and all sorts of bizarre other genetic disasters.) I was supposed to have it Nov 11 while seeing a variety of docs at the Cleveland Clinic. But scheduling fell through, and no one could agree who I needed to see, and the doc has no openings until the end of the year. I am pulling my hair out. But only to a degree. Because I realize, even were it positive, I, like anyone else am not guaranteed any shorter life than I would have without it. I could get hit by a bus tomorrow. I am tired, beyond tired, of living my life as though under a cloud of doom. So I have decided to focus on the things that bring me joy. I am happily planning my wedding next year, and refusing to rush any aspect of it. I am settling in to the lovely home my fiance bought for us, and decorating it and making it our own. I think you have to do that at some point, to the largest degree your health permits. We have learned to accept the reality that no plan is ever set in stone, and to set our expectations accordingly. But the fear, absolutely, is a real and palpable thing. Hang in there! Sandy

Wow, I had to have like 9 a week or so ago, but fortunately I have a port, so my home health care nurse can take my blood at home, and then I can immediately hook up to a liter (or two if need be!) of saline. Good luck, fluid load as much as you can, and let us know how it turns out! Sandy

I first had syncope episodes when I was seventeen, which is 19 years ago. But my symptoms were largely mild, until I hit 30. I was diagnosed with POTS at 31, so about a year after severe symptoms popped up. I got my EDS diagnosis in April, so four years later. So from onset of severe symptoms to diagnosis of probable cause, about 4 and a half years. Sandy

I am a florinef flunk-out as well. I had ovarian cysts and breast swelling, a bit of the moodiness, although not quite to the same degree. I also had massive migraines, which was totally unacceptable. So I have tried it three times, for about 2-3 months each time, and it just has not worked out. Hope this helps! Sandy

My midodrine actually had to be doubled, from10mg 3x daily to 20mg 3x daily. But it wasn't necessarily connected to going gluten free. I have been strict GF since March (except for when idiot restaurant managers insist they know what I can handle better than I can! Cross contamination exposure makes me so ill I might as well had a cupcake, with regular flour. It seems there are a few bad eggs out there who always put profit before consideration, but that's another story!) and we upped my dosage last month, because I was having trouble maintaining even 80's/40's sitting, and was having syncope or near syncope episodes literally every time I stood up. I was taking a lot of really nasty falls, and the only thing that saved me serious injury was the fact that I lucked out and passed out over carpet almost every time. We are thinking it was a combination of my Celiac making it very difficult to stay hydrated and salted, as well as my EDS taking a major, major turn for the worse. My home health care nurse says she feels terrible for me, because in her opinion Celiac disease or gluten sensitivity is about the worst possible combination you can have with POTS. They just don't play nice together. Sandy

This is the sort of thing that keeps me awake at night. Take away my midodrine, and you take away the vast majority of "normalcy" I get. I have once very nearly died do to shock from my hypotension affecting things so badly before being on the med. I am so much sicker now, and need a MUCH higher dose than I used to, just to keep my BP in the 90/60 range while sitting. I hope, really hope the FDA will consider anecdotal evidence, because I really do not know what I would do without it.

Fell asleep without getting fluids (like an idiot!) and slept all day. Have to get some fluids and back to bed so I can take care of this tomorrow. The pain is just wiping me out. I can hardly lift my left leg at all, making everything so very hard. It exhausts me, and then I sleep too late to get in ans see anyone, and I don't want to drag my fiance to the ER at four in the morning. So, better luck tomorrow. Fingers crossed! Sandy

I have the exact same cycle, and for a moment MS was on the list of possibilities. My testing was covered by insurance, thankfully mine is very good. But it was ruled out. They eventually did dx me with EDS type III/Joint Hypermobility Disorder and Celiac disease. Which explains some of the cyclical degeneration going on. But it can also just be simply your POTS. I would thank your friend for their concern, and tell them that if they want to volunteer rides to appointments and other valuable support, you are very grateful. But if they in any way imply that you are not "doing enough" or "trying hard enough" to get well, I would invite them to keep their opinions to themselves. Sandy

This JUST started happening to me this week! (Yet another new symptom, jeez!) I don't know if it is related to my hip/spine injury, or if I am having random hot flashes and profuse sweats, or if it is somehow connected to my hysterectomy, even though I am on a fairly large dose of estrogen, via the vivelle dot. I have no insight as to why, but I can commiserate! Sandy

There are some great articles available online written by Dr. Blair Grubb, that are great general overviews of the syndrome, and the myriad of symptoms that can come along with it. He has done a great deal of research, so you run into his name a lot. Also some very helpful info on the Vanderbilt University Hospital site. Some quick links: http://knol.google.com/k/postural-tachycardia-syndrome# http://www.mc.vanderbilt.edu/root/vumc.php?site=adc Hope that helps! Sandy

DizzysillyAk, I am so very sorry if you felt I meant to minimize your symptoms or your experience. That was not at all my intention, nor my intent for anyone else. I know all too well that we get too much of that crap from others! I meant to simply stress how very important it is not to go gluten free without consulting a doctor, mainly because if it does bring about much needed relief, it will render you unable to get the definitive test results that doctors are so very (overly!) attached to. I tested negative to every conceivable test, and was quite literally wasting away to death in front of my friends and family. Gluten, and Celiac disease were highly suspected, but I tested negative to blood tests and my biopsy came back negative. The gastro who diagnosed me explained later that even biopsy is not conclusive, it only counts if they find the right section, and my damage may have been further down, or the fact that I was limiting (although not entirely ruling out) my gluten intake. It was the combination of finding a low IgA when in the hospital for a separate matter, That finally flagged me as a possible false negative. A genetic test, and a strict gluten free diet literally saved my life. I do not mean to imply that gluten intolerance, or food allergies, or any number of the problems that complicate our lives and make treatment that much more difficult are by any means "less". So if I offended, I am truly, truly sorry. I did not expect to dine on my foot for breakfast, but it seems I have! FWIW, from what you described, you would meet every standard of Celiac Disease, far better than I. Unless you got the itch from **** oh so not fun and oh so unattractive Celiac rash. Dermititis Herpetiformis not only has a really horrible sounding name, but is sheer misery to deal with. Only upside at all was that it clinched my diagnosis, as it happens only to Celiacs. Certainly what happened to your would warrant it. I am so glad you have had some recovery. Any small victory is well worth celebrating. My apologies again, for being an inconsiderate @rse! Sandy

I had a horrific experience after drinking the glucose drink for my GTT as well! I have severe nausea, although it has improved a great deal since the diagnosis of Celiac Disease and the implementation of a gluten free diet. A word to the wise though, don't go gluten free without talking to your doctor FIRST. The testing they do for Celiac is all dependent on how your body reacts to gluten, so if you go GF free you will come back with false negative results. As Celiac can dramatically increase your risk for intestinal and colon cancers, as well as put you at increased risk for malnutrition, it is very important to know if you have Celiac disease. That said, a far larger number of people are gluten-sensitive, and while it is not as dangerous as Celiac, would benefit a great deal from living gluten free. Just make sure you pay attention to healthy diet either way, cut out processed foods wherever you can. It seems to be a cruel joke that to be healthier we need to drag ourselves out of bed (or couch!) to prepare every meal from scratch to keep out bellies happier, but I make do by keeping things in the house that I can either make in large batches and repeat at will, or salads with lots of protein that are easy to make in minutes, even when I am sick as a dog! GI symptoms were always my worst, I had the gamut: nausea, diarrhea, vomiting. I still have my moments. I get great results from scopalimine patches, but if I use them to many days in a row they seem to lose efficacy, and can lower my already problematic hypotension. I also use zofran and phenergan. Reglan used to do wonders for me, but I started developing the tics associated with tardive, so had to stop it. Your GI tract is part of the autonomic system, which is what is affected by POTS. So most of us have tummy issues, you will see it as a frequent complaint. The chest pain could also be linked to your tachycardia. It is really scary, and can make you feel really panicky, which just drives your heart rate higher, making things worse. Try to remember that while it is not normal, it is normal for YOU. That being said, you should ALWAYS tell your doctor if you are having any kind of chest pain. Better to be a pest that to miss a dangerous symptom. The only stupid question is the one you don't ask. I am so sorry you needed to find us, but I am glad you are here. Having a support system is key to managing this disease, and this forum is a great part of it for many of us. Sandy

I am so excited for those of you who are experiencing remissions, and having such much needed relief! Hooray! Sandy

There are some wonderful things to be said for facebook, despite some of the frustrations. It is a great way to keep friends and family updated on whether or not I am in the hospital. I have my account security on highest settings, and you can block anyone you please. I have found some amazing POTSie friends online. I have been able to do my (small) part to raise awareness, participating in online events like "Day of Visibility". So it is not all bad! I saw my pain doctor the day before yesterday. Sorry for the slow update, after not sleeping for close to a week due to my pain level, I collapsed last night and slept nearly 24 hours uninterrupted. The pain doctor looked at my lumbar and sacral areas, as well as the left hip, and saw massive amounts of inflammation. Will be heading to the ER tomorrow (well, later today, really) to see what is wrong. So validating to know that there was something easily identifiable, though, and that I am not "exaggerating" as I have often been accused in the past. The first thing he said when he turned on the machine was "Good God, no wonder you can hardly walk!" I think most of you can relate to that. Not at all happy that I am injured, but thrilled that it is quantifiable. I finally woke around 2am, got out of bed and promptly passed out after a day with no meds and no fluids. But have some food and drugs in me, am hooking up to fluids, and will go get checked out in a few hours. So, yay for answers! Sandy

It is so hard to remember you can still feel pretty and girly. Having the energy to do anything about it is so darn hard. I confess I completely cheat and order a lot of my cosmetics and facial care products from my fave store. I can get a treat of Lancome mascara (which is the best stuff on earth) and some Estee Lauder lip conditioner which is the very best stuff I have ever found for soothing my poor chapped and abused lips. That is often all I can manage. And the online shop means I don't have to leave home. When I am really feeling good, my fiance will take me there, and I will get a free makeover, so I don't even have to do my own make-up! Fingers crossed one of those days come SOON! Sandy

I just "flushed" for the very first time tonight. It lasted about two hours, and was on several parts of my body. Face, arms, legs. Sweat profusely. Will be calling my PCP first thing in the morning. I can't tell you how thrilled I am to have yet ANOTHER new symptom pop up. Sandy

It is 4am and I am wide awake and in agony. Can't sleep for the pain. My hips are so bad now I can hardly walk, and when I accidentally put all my weight on my left leg for more than a moment, I collapse. I see the pain management doc in the morning, thank the dear Lord! I have been told of some arthritis in my neck, but that's all I know of. The MRI of my C and and T-spine came back as showing only slight degeneration, nothing they felt unusual for someone in their thirties. They didn't do the lumbar MRI. I have a feeling there will be a lumbar and sacral area MRI in my future. What I fear is that it will show nothing, just like all the other tests. It is comforting to hear that the pain and degeneration can slow, or even stop for periods. Mine seems to have been happening so fast, I am terrified of what I will lose next. So it is really comforting to know it may not be like this always. Thanks! Sandy

I have had one "remission" of about 75% of my health, that lasted for about three or four months. As I said on another thread, though, I am blessed beyond belief because it led me to be able to briefly return to work. While back at work, I met Marty, who not only is the love of my life and the best support a girl could ever possibly hope for, but will also be my husband in just over a year. (Health permitting, we are planning a "pre-anniversary" celebration tomorrow to celebrate the fact the we are getting married in exactly one year. With all my health issues, we really try very hard to celebrate any and everything we possibly can!) My medical team has given me to understand with my current complicating factors, further "remissions" are unlikely. Some days are better than others, but there is no expectation I will ever work again, and am becoming increasingly disabled. But I celebrate the fact that I am officially off the hook for having to do the dishes, permanently! I find I cope a lot better by focusing on those things that make me happy, the people I love, and the blessings that God abundantly bestows upon me. My understanding is that for many others, though, remission is certainly a very large possibility, so PLEASE do not despair based upon my experience. If anything, take great hope in the fact that my life, despite its pain and other challenges like increasing disability, is so very, very joyous! Sandy

I don't know what other medications you may be on, but I had elevated liver enzymes that we initially thought was due to the medication Cymbalta, although it turned out to be due to a problem with my common bile duct, as we found when I had an ERCP. So since you have both gastro issues and from the sounds of it some panic, I thought I would mention my experience to see if either one of those options might give you some insight. For what it was worth, the ended up having to put a stent in that common bile duct, and it was not something that showed up on my abdominal CT or other imaging tests. And Cymbalta, and other anti-depressants in the same class of drugs can cause liver enzymes to elevate, sometimes so badly that you have to be removed from the drug immediately. Before they had did the ERCP, they stopped my Cymbalta cold turkey, which was the most miserable experience of my life. PM me if you have more questions. Sandy

I totally relate to this thread, every bit! I am usually such a sunshine-y, happy, positive person. But when my symptoms really flare, I tend to loss my reign on my emotions and whatever one pops up is expressed at 150% of its usual intensity. Sometimes that's okay, because the emotion I am feeling is more or less positive. But sometimes it is soooooo not okay. I had to break up with my church last weekend, (very long story short is that they have not only abandoned me as I grew more ill, but actually became critical!) When I finally lost it I was sobbing and cursing and behaving really badly to someone I really love. When I got home I completely fell apart to Marty (fiance extraordinaire!) to the point where he told me later he had never seen me so broken. It was a terribly painful experience, for sure, and some of my reactions were valid and appropriate. But for the most part, I was just far too emotional and my internal censor checked out completely, sleeping on the job I guess! I have found that frequent apologies are a part of my "new reality". So good, as everyone seems to have said, to know I am not alone! GingerA, no matter how old we are, it seems to me that losing a parent always leaves you feeling a bit orphaned in the world, and a bit lost. Like one of the points connecting you to earth came unstaked, and so you are left feeling slightly unglued. Or at least that was how I felt when I lost my Dad. I think it is in so many ways easier to focus, almost obsess, on anything else. because that is easier than dealing with such a big loss. And if, like me, the relationship was less than perfect, everything is such much harder, and therefore that much easier to ignore! Throw in your own illness to cope with, and you have all the ingredients for disaster. I would strongly encourage you to lean heavily on your support network, and make every reasonable effort NOT to isolate yourself. Every person's experience off grief is different, so give yourself permission to grieve in whatever way and timeline that is natural for you. Please feel free to PM me if you would like to talk further. Sandy

And Tennille, all of us go through periods where we can't see the light for all the darkness. Dealing with this disease can be brutal. Watching the list of "I used to...." get longer and longer is hard for all of us. You are definitely NOT alone. I find that even when I am only awake for four hours or less out of the day, stopping by this forum is a huge help to my feelings of isolation. So I would encourage you to try to swing by, even when you are feeling really awful. My laptop is my saving grace, they should supply them free of charge to us POTSies! How much better would all of us cope if it were easier to reach out to others without having to get out of bed! Sandy

I am actually on IV saline therapy (via my port/cath) for this very reason. As quoted by the Celiac Disease Foundation: "Damaged villi (in the small intestine) do not effectively absorb basic nutrients- proteins, carbohydrates, fats, vitamins, minerals, and in some cases, water and bile salts." When I first got sick from my untreated and at that time undiagnosed celiac disease, I could not stay hydrated no matter how much gatorade I sucked down, and lost over 35 pounds in less than five months. (I am about 5'8, and I went from around 160 pounds to 123 or so, and have struggled to put weight back on ever since.) There is just simply no way for me to stay hydrated, or manage my hypotension, by simply drinking fluids by mouth. Occasionally, a girl has to come up for air! We are still trying to figure out the amounts I need via port to be stable. It's a work in progress. I too, am strictly gluten free, as the slightest cross-contamination can have horrific results. The last one cost me 10 pounds in 10 days, and I am still not recovered. I have the added frustration that as of yet, the haven't found the damage to my intestine. We know it is there, because of the after affects, it just hasn't been found yet. So I have a hot date with the gastroenterology department at the Cleveland Clinic on November 11 in part to talk about special scoping the goes further down the "line" than a standard endoscopy. Fingers crossed! Sandy