sandymbme

I was diagnosed with Celiac disease in February. I have noticed a dramatic improvement in my GI symptoms, but as other posters have said, you really have to commit. I can still have bad GI days due just to my POTS. But I can definitely tell if I accidentally ingest gluten, the response is pretty quick (within a few hours) and it's brutal! The one thing I would caution you about, you really should not commence a gluten free diet without seeing a doctor to be evaluated for Celiac disease. If you quit gluten before testing, it throws off the results, potentially leading to a false negative. If you are Celiac negative, you can certainly be gluten intolerant, and change your diet accordingly to see if it helps. Just be care to make sure you are getting a balance diet, and including plenty of gluten-free grains. (rice, corn, quinoa, etc.) Sandy

I have actually almost flat-lined while hospitalized. My mom quite literally saved my life. (She's an RN) The last measurement was 40/nothing, and falling. The nurse I had wad "too busy" to respond to my Mom's increasingly frantic calls. So she finally decided to heck with it, and took care of me herself. As she said, she wasn't about to sit back and watch me die when this was a situation she was trained to handle. And when the nurse finally showed up, she had the nerve to yell at my mom for touching hospital equipment. At which point mom went postal! I got transferred to a telemetry unit and ended up spending a total of two weeks in the hospital. I normally run about 90-100/60-70. But on my bad days it is more like 80's/50's. Or I get these weird narrow pressures, like last night was 90/76. And for some reason the narrow margin pressures are the ones that make me feel the worst. Sandy

That is absolutely outrageous! I would be furious! And it can't hurt to try to negotiate with the office over your portion of the fee, even if the insurance company had it waived. The worst they can do is say no! Sandy

I had horrific, constant nausea that refused to respond to anything except Reglan, but I developed some troubling neurological side effects and had to stop taking it. After that it was basically two years of GI torture: diarrhea, nausea, abdominal pain, the works! But I got diagnosed with Celiac disease in february, and as much as I hate to admit it, (because I am the world's biggest carb junkie!) after about 4-5 weeks things started to completely calm down. The only time I have any trouble is when I accidentally have something that isn't clearly labelled, or through cross contamination of food. Other than that, everything has been peachy since! Good luck! Sandy

It is interesting that this subject comes up for me personally, because as a result of a lot of prayer and consideration, I have decided God is calling me to seminary education/training. And my specific dream, is to create a kind of "virtual" non-denominational church looking to directly serve the needs of those who are housebound either through illness or disability. I think there is no reason with all of this technology available today that anyone should be disenfranchised from the experience of participating in group worship. Ideally it would have services for people to listen to, or read, or delivered in braille for the deaf/blind. I would also want to incorporate discussion groups (moderated chat rooms/forums), that would give anyone and everyone to participate in Christian community. Of course, given that this dream is both a work in progress, and I am a long way from being an accredited minister. None of this helps your son at the moment, for which I am profoundly sorry. Not only did Christ have a special compassion for the meek, the sick, and the lame, having spiritual support from a healthy "body of Christ" (i.e. church) provides something all of us struggling with illness and disability need desperately: hope. I would reach out to this youth pastor again, maybe he is simply extremely cautious in his one-on one interactions in order to make sure his actions are clearly above reproach. Perhaps you can gently remind him though, that the command Christ gave us to "love one another" did not have the qualifier of only loving in ways that are comfortable and familiar for you! Good luck, and I will keep you both in my prayers! Sandy

I had negative tests, until I was in the hospital in January and the GI doc noticed my IgA (?) was abnormally low, saying that would make any celiac test invalidated. I had recently had a negative endoscopy, but this gastro felt that there was more than enough clinical evidence to warrant genetic testing. Which came back positive. When we factored in huge family history of colon cancer, and the fact that my constant diarrhea, nausea and rapid weight loss all stabilized once I went on a strict gluten free diet, she felt that was enough to base a diagnosis of Celiac disease, especially given my reaction on the two occasion I ate some thing that had hidden gluten or cross contamination. The effect were dramatic! I was so bummed though, because I am absolutely the carb queen, giving up beloved pastries, cakes, and breads is rough! But I have to admit, not wasting away to nothing is a huge motivator! Sandy

I have been hospitalized several times (usually for a week or so every 2-3 months) and I agree with the advice that you should talk to your doctor and ask what his/her parameters for the ER would be. That being said, there are a couple of times where you would definitely want to go to the local hospital ASAP, they can always transfer if it is beyond their scope of care, but some situations do need rather immediate attention. If he has a syncope episode and is unconscious for more than about a minute, call the squad. If he is showing obvious signs of dehydration (which makes it really hard for POTSy people to maintain "normal" HR and BP) like a white tongue and overly dry skin, go to the emergency room. If his pain level is uncontrolled by and pain relievers or painkillers, go to the ER. There is a good chance under any of these situations you may get resistance or pushback from the staff. I have a binder I take with me every time I go to the hospital, that has the latest articles published by Dr. Grubb regarding POTS, copies of my doctor's orders for IV hydration 3x a week. (I too, have been accused of IV drug use. It was infuriating and humiliating, especially since I had those records with me that clearly documented the only thing going in my veins was salt water!) I also carry my healthcare power of attorney, living will and DNR. It's overkill, but you look less like a looney when well armed with facts! Definitely talk this over with your medical providers, ASAP if these issues are ongoing. Sandy

I see a lot of posts of late from parents with fairly young children. But I also know that for myself, and many others, autonomic dysfunction is something that appeared seemingly out of nowhere much later in life. I am wondering if we are slowly seeing people in the medical profession becoming more aware, and looking for symptoms at an earlier age? Or did we simply fail to see signs when we were younger because of insufficient technology? I had my first syncope episodes when I was 17, but my POTS seemingly receded for much of my 20's, only to come back in a FAR worse incarnation when I was 32. (My 32nd birthday, specifically, so I can always cite the very day my symptoms "started") I was 33 before a diagnosis occurred, and completely desperate by that time. And while my body seems to be determined to limit me, in a strange way my illness has liberated me as well. There has been a lot of nonsense I have freed myself from, and have assembled the most amazing group of people as my support network, I can only thank God for rearranging my priorities, even if it was in such a completely life altering way. Sandy

Songcanary I think you may be thinking of some of the "Naked" juice blends you can typically find in either the (refrigerated) organic section, or with other cold juices. They are basically smoothies made from pure fruit and no added sugars or chemicals. They have several varieties, and I love most of them. Just be forewarned, the protein varieties can be awfully chalky, so I usually go for the more basic varieties. But even the basics are chock full of all kinds of vitamins and minerals, with no added sugar, and no corn syrup. Sandy P.S. Here's a link to their site, to find stores, flavors, etc. http://www.nakedjuice.com/#Homepage

I so relate to this right now! I have been sick for just over three years, but my overall health has declined dramatically in the last 6 months to a year. In that time I have acquired one new diagnosis, (Celiac Disease) but still have issues that don't fit my previous dx's. There are times where I just want to curl up and cry defeat, and accept that the hope of a "normal" life for me is just gone. At this point I would happily settle for just stabilizing, where I could work around my illness a bit. I am following up with Dr. Grubb next week, and trying to gather up all the data I can to give him the most complete picture possible, in hopes of a new direction. Good luck with your own search, I'll be praying for you as I fight my way through mine! Sandy

{{{{{{{{{{Tearose}}}}}}}}}}}}}}} Sending gentle hugs and much love and support. That was a terrible, frightening experience to go through, and I applaud your efforts to advocate for yourself after the fact. One of the most difficult issues facing those of us with "invisible diseases" is that it is just too easy (not to mention much cheaper!) to write us off as "mental health patients" or "drug seeking" or "hysterical". It is an experience none of us should ever have to go through, yet most, if not all, of us do at one point or another. While no where near the experience you suffered, I have had bad hospital experiences, and suffered through a couple bad specialists until I realized I don't have to keep seeing the first one my primary doc sent me to, and could ask for a new referral! I will post a link here for the Joint Commission's Hospital Accreditation website. If it is not already posted somewhere on this site as a useful link, somebody tell me how to add it! They are the national hospital oversight board, and in charge of keeping hospitals licensed to practice medicine. You may find it much more effective, and cathartic, to file a complaint where it will carry some real weight. Your story definitely reflects a level of insensitivity, not to mention downright shoddy medical practice, that should be heard by those in power to effect change. Thank you for being so brave, and for sharing! As I am sure you know only painfully too well, sometimes the support on this forum, from people who know exactly what you are going through, is more precious than anything! The aforementioned Link: http://www.jointcommission.org/accreditation/hospitals.aspx Sandy

In desperation this is something I have tried, and promptly passed out, was in a zombified, completely stupefied state when I woke up, and even being in a freezing stadium (The Browns season ender, so Cleveland in January!) with thousands of screaming fans and could not stay awake. Not a good experience at all! Have never, and would never, try it again.

I take 10mg of midodrine 3X a day, and a teeny-tiny dose of atenelol (12.5mg, half a 25mg tablet a day) every day as well. I have been having both record low pressures (BP is regularly in the 80/50-90/60 range) but my HR has been so high (137 laying down for over two hours) that I can't justify changing either dose. I am afraid if I reduced my midodrine at all I would be unconscious ever time I tried to sit up, let alone stand. But I am afraid of what would happen to my HR, my tachycardia has just been so bad. My EP said I could alter the dosage of the midodrine as needed, but I would definitely check with your doctor before messing with dosages. Not much advice here, really, but I commiserate! Sandy

So sorry! Hope you get to feeling better very soon! I have noticed with my POTS that any time my body is under stress for any reason, I get tremors and chills. It is definitely adding insult to injury when I am already sick or in pain. The one small comfort, at least for me, is that it does not typically represent something more serious. But do contact your Doctor, and see if they think this is anything you should get checked out. Sandy

First of all, I would NEVER give a "second chance" to a doctor who gave a gratuitous psych diagnosis, let alone two of them! I had to have an emergency hysterectomy at the beginning of January, and my ovaries were removed along with my uterus. (Long story, I will spare you guys here!) Which threw me into instant menopause at age 35. Can I say how much that SUCKED?!?!?!?!?!?! I suffered from horrific insomnia, pretty much from the moment they took my ovaries until I finally broke down in desperation and started hormone replacement. Not to sound like the total arch-feminist,but it is the height of inequality that billions to deal safely and effectively with men's hormonal problems with aging, (viagra, anyone?) but women are still viewed as "hysterical" and "neurotic" rather than aging normally with normal discomfort that can be effectively treated. GRRRRRR........ Second of all, I would refuse on general principal to give my business and my confidence to any doctor that gives pat, general answers to my very specific set of issues and complications. After all, even a "presumed" or "probable" (forgive me I forget the exact wording) diagnosis of dysautonomia would have significant implications in treating sleep disorders. The doctor's dismissive attitude gives me little confidence he could treat me effectively, and more importantly, safely. I would NOT see this idiot again! Sandy

Oh my dear! It is so very dis-heartening to be treated with suspicion and disdain. Especially when you are frightened and in pain! Is your primary or POTS doctor affiliated with your local hospital? If so, they could set up a written protocol for your treatment, where rather than asking for specific medications, you request a treatment plan they have on file. Or you can call your doctor (or his messaging service after hours) before you leave the house and ask him to call ahead for you. In my experience, no matter how knowledgeable you are about your condition, ER staff is just not interested in your opinion. They want data. It is helpful if you have a blood pressure cuff at home and can provide your vitals. If you take a reading every 15 minutes you not only can get a picture of whether you are improving or getting worse, being able to provide specific numbers makes you look more like an informed patient and less like someone just giving vague complaints trying to get opiate pain meds. Let me re-assure you on the other matter troubling you as well. God cares deeply, passionately, and personally about you. The fact that you are still here at all testifies to God's care and provision for you. I know it sounds hard to believe, especially when you are in pain, frightened, and feeling so terribly alone. But the fact that God allows us to make mistakes, to struggle and survive on our own, is proof of how very much he does love you. The more deeply you trust someone, the more deeply you love them, the more freedom you allow them, right? Well God loves us so much, he not only gives us complete freedom, but He has forgiven us for all of our sins, even when we "spit in His face", IN ADVANCE. And any time you need God's attention, you have only to pray, God is instantly available to you. In fact, God loves you, personally so much, He begs you to pray to him, because God respects you so much he won't barge into your life without you inviting him in. Sorry that I kind of went off on a tangent there, and I hope I didn't offend. But we "POTSy's" all have so very much on our plates, I felt compelled to remind everyone that we also have some pretty rich blessings. Not the least of which, is the wonderful community here! Sandy

For me, florinef just does not do enough good to be worth the increased migraines. So it is my medication of last resort, we only use it when all other options to bring up my BP have failed. When my BP gets stabilized again, usually 4-6 weeks later, we titrate my dosage down and get me off the medication again. Sandy

I have been on 10mg of midodrine 3x a day for about a year now. I am quite sure that I would rarely have a day without syncope episodes without it, given how low my blood pressure is even with the medication. (like 90/60 seated, and I rarely take my standing pressure. I just don't want to know!) I absolutely could not function at all without it. Granted, I don't function much with it, but a little is better than nothing! Sandy

Hey Jana, Sorry you are struggling with this. I don't have any helpful advice, my pain level has been escalating quite a bit in the last year or so. I can only offer empathy, which frankly, isn't bloody helpful! Hope you find some relief in trying these supplements, let us know if you do! Sandy

You poor thing! I was dismissed by my doctor, but that humiliating and frustrating experience led to me becoming a more informed patient who is MUCH better about advocating for myself. My current PCP is awesome, but after my last doctor "fired" me, I was so determined not to go through that again that I thoroughly interviewed the leading candidates I had in mind. I spoke with their office staff, asking about the availability of appointments, notification of lab results, etc. I asked the doctors if they were willing to be filter through which all of my prescriptions and orders are viewed through. I made sure she could handle working with a team of specialists, because I see several, none of which talk to each other! My MD "interviews" took some time and effort, but getting a feel for their policies, philosophies, and practices BEFORE I became their (angry) patient saved us all a lot of grief. I would ask their office staff most of my questions to weed out the easy "no's", and then scheduled an office visit to "interview" my top candidates. A little upfront effort on my part saved me countless grief down the road... Sandy

I have actually checked out that website, which is a big part of why I am concerned. I definitely have stretchy, velvety skin. And in the last year or so frequently have excruciating pain in one (or more) of my joints. For example, I woke up today with searing pain in my right hip, I can hardly walk. It hurts to move it, hurts to put weight on it, and hurts even when I am lying down with my weight off of it. I was just in the hospital for 6 days with horrific pain in my spine. They did MRI's of my thoracic and cervical spine, as well as my brain. The only thing they found was some thoracic disc degeneration, which they said was common for someone my age. But the pain was so bad I could not turn my head, and triggered migraines every time my pain meds wore off. I had a physical therapist once tell me I was the oddest bundle of contradictions she had every seen. She said my joints were either super hypermobile, or had almost zero range of motion. I am more than a little worried after doing some reading up on this. I already have my hands more than full with POTS and Celiac d Disease, I really don't need anything else! Sandy

So the last time I saw Dr. Grubb, he said I had joint dismobility disorder, but I find myself wondering whether I have the benign form, or a form of EDS. Specifically, I am worried about the vascular form. When I had my hysterectomy a couple months ago, the ob/gyn surgeon commented on my uterus being extremely fabrile, that she actually had trouble getting it out because it kept falling apart on her. I also had to have a port/cath implanted back in may, because I am such a ridiculously hard stick. I get IV fluids 3x a week to try to stabilize my low BP, and my home health care nurses had a terrible time getting IV's started in me. On the rare occasions they got a good vein, it would blow as soon as they tried to flush it. I have an appointment with Dr. Grubb next month, are there specific questions I should ask about this? Sandy

Sadly I relate to this only too well! In my search for a diagnosis to my inexplicable 9 month migraine, I had one doctor tell me to my face I "just needed a good anti-depressant". And even after my conclusive diagnosis of POTS, I deal with suspicion and misinformation pretty much every ER visit. Because my most frequent emergent symptoms (migraine and GI issues) are the same symptoms patients patients who are drug-seeking typically claim, I am viewed with suspicion and hostility from the word go. Despite the fact that I always have my PCP call ahead and advise the ER that I am on my way, and chronically ill. It is absolutely maddening! I can't count the number of times they have out-right denied me treatment because their labs didn't show anything conclusive, so despite my known illnesses (I have Celiac Disease as well), I am clearly drug-seeking and should not get ANY treatment. And I have NEVER requested narcotics. I have regularly requested pain relief, but frankly, my migraines respond much better to toradol and DHE, or toradol and caffeine. Narcotics cause rebound headaches, so I would rather NOT have them when I have migraine issues. And even when I am having an issue that would be aided by narcotics, I never specify which one... I count my blessings, though. I have an amazing "team" of medical providers. Dr. Mark Stillman at the Cleveland Clinic is my neuro, and the director of their headache and facial pain clinic. He is the doc who initially guessed (correctly) that I had POTS, and sent me for further testing. Dr. Grubb is my electrophysiologist, and I think we all know what a gifted and compassionate provider he is! Even my PCP, Dr. Jill Nicholson (of Columbus, OH) is truly empathetic, willing to learn about areas she lacks expertise in, and happily coordinates care for my admittedly complex case. I am hoping my gastro doc back home in Columbus (currently staying with my folks in Charlotte, but I hope to go home around the first of may) will be up to treating my Celiac Disease. If not, the gastro specialist I saw at the Cleveland Clinic actually specializes in treating Celiac Disease, so one way or another, I will be in good hands. So I am blessed that my care "team" rocks, but like so many of us, it is a total crapshoot any time I go to the ER, or get admitted to the hospital. Sometimes I get lucky and get a doc who is willing to learn, and will happily consult with the appropriate member of my "team". Sometimes I get unlucky< and not only will they insist that they can't talk to a doctor who is not affiliated with their hospital, but they don't believe in "syndromes", only "disease". Those are also the times I end up with severe, sometimes life-threatening complications. I hate those times! Sandy

I feel like this all the time, and "walking through water" is EXACTLY how I describe the feeling! As of yet, though, haven't found anything that works long-term, and very few effective short-term solutions... Sandy

Good for you! Sending positive thoughts and prayers your way! Sandy