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Everything posted by erickamcc0523

  1. Has anyone ever mentioned how flexible you are? If so, I would investigate the possibility of Ehlers-danlos syndrome, a connective tissue defect that is one of the more common causes of POTS. Joint dislocation (feeling like they're "going out of place") is one of the symptoms, along with joint pain, and other issues.
  2. I have been gluten free since January, and while I still have POTS (and sometimes, even bad enough symptoms to go to the ER with), I can tell there is a difference in how much my pulse and bp fluctuates... Them fluctuating is the first sign I have when I'm glutened. I never really ate that much bread or pasta, so I just completely cut those from my diet. As carbs seriously inflame my joints, I usually stay under 50 grams a day... The one thing I've noticed is that I don't have as much problem of holding onto water since I've gone gluten-free. My neuro supposes that's because my body isn't trying to divert all of it to my guts in an attempt to protect itself against the gluten. Still have issues with that, especially with the summer heat here now (I'm getting frequent IV fluids right now)... Overall, I would say things weren't as bad, but I'm still pretty symptomatic. I think I may have other food allergies, or perhaps I've just done so much damage to my body it'll take a couple years for me to see the full effects of a gluten-free diet.
  3. How in the heck do you keep the thigh-hi stockings up? I just got a pair yesterday, and they help with the air hunger I get quite often. My heart rate on average has dropped a bit, too, but I can't handle them rolling down all of the time!
  4. So, it's been a bit unseasonably warm here (mid-90's with humidity about the same, so heat index of at least 100), but normally if it's hot early in the summer here, it will be especially horrible later in the summer. I'm already dying right now, and I've nearly fainted at least 6 times in about at 15 minute span just being outside in the heat. My feet especially will swell up and turn some interesting shades of red and purple. I used to hate the cold in the winter, but since my surgery this past Nov that set off the POTS, I can see that now winter will be the preferred season for me as it's far easier to cover up with extra layers than it is to not feel like I'm cooking in the inside. I also don't sweat like I should... either I don't sweat at all (other people will be drenched with sweat and I'll have just a very small sheen on my forehead), or I am sweating buckets. It's never really the same two days in a row. Any advise on how to survive this summer??
  5. The most common one is psychosomatic, but I've also been dx'ed as bipolar (rapid cycling and very uncontrolled even with meds), anemia, migraines, anxiety, *JUST* GERD (and not gastritis and Barrett's Esophagus along with that), runner's knee (when I was 10, and I didn't even run back then since I got lightheaded)... I was also diagnosed and treated wrong for patellar subluxations (I had a lateral retinacular tendon release... my only non-stretchy tendon in my knee, so know they're even more messed up before the surgery), which has made the POTS worse. I had my last knee surgery Nov 09, and was dx'ed with POTS Jan 10. I had POTS symptoms before surgery, but they were exacerbated by the trauma of surgery... so what is really frustrating is that if I'd been dx'ed with EDS before my surgery, I wouldn't have had surgery, my knees would be pretty terrible, but not on the level of horrible they are right now, and I would have as many POTS symptoms. I'd also forgot drug seeking, too... It's not my fault that EDS HURTS, especially when knees and hips are constantly popping in and out of place. But, no.. tylenol should take care of that pain, never mind my knee has not been able to stay in place for the past 3 days straight unless I'm wearing the immobilizer. I know there are many more mis-diagnoses I've been given, but I'm really trying to forget about all of the wrong diagnoses and horrible doctors who gave them. What matters now are the 3 good doctors and diagnoses I have... If I were the type, I believe that I could have a nice lawsuit, but since I don't relish talking to lawyers (I hate them even worse than doctors... with good reason, long story) I just go into a new doctor with the knowledge that I most likely know more about my own illnesses than he does and pray that I'm pleasantly surprised that, no, for once they know more. That's happened only once, but if it can happen once, it can happen again.
  6. Oh yes, especially when I stand up. What ***** is when I'm having them when I'm trying to practice organ or piano. My fingers almost lock up and don't want to function. I hope that I'm able to learn how to play bagpipe (something I've ALWAYS wanted to do since I was 8) in spite of this.
  7. I can always tell when it's going to storm... I'm actually more accurate than the weatherman. I have a worsening of POTS symptoms, and I also have a knee and a hip that is very accurate at predicting the weather (OUCH!). I also know when the barometric pressure is changing, as that's what ultimately causes the majority of my symptoms.
  8. Good luck! I hope your appointment goes very well and you end up with an awesome doctor! Now, for my word... discombobulated. Although I must not be that much so (right now at least), since I could think of the word in the first place.
  9. Eating is a very big struggle for me. At times I can't even eat a bite as just the thought invokes such horrible feelings (I am also recovering from an eating disorder, with no huge relapses the past 2 years, although that is a daily struggle). Other times, I can't stop eating, especially those things that are so bad for me. Thank God it's been over 3 years since I've "compensated" for a binging episode, though. This is all mixed in with stomach problems (5 years of undiagnosed gallbladder attacks and nausea even after it was taken out, GERD...), so I can say that eating is easily one of the most complicated and complex things that I do every single day. Oh, and I stand up some times, too, but that just goes with the POTS. I really wish that I could eat just for the sake of nutrition and to function as best as I can, but for about 12 years (with 8 especially horrible years), since I was 12, food has long been a very complicated issue for me. I tend towards the "orthorexic" tendencies (specific types of food, especially organic and specific brands) even when I'm not in a disordered state, but doing that is more about being able to cut out a great deal of food that I won't eat than it is about being healthy. I was a vegetarian for 4 years, again not for the sake of health, but more because it was easier to practice my eating disorder if there were whole food groups I wouldn't eat. Part of why I have been (again, not so much as when I was younger, but it's still a constant battle every day) entrenched with my ED for a long time is that with genetics (my mom is and my grandmother was the same way) I weigh about 20 pounds more than I actually look like I weigh. Even though I know this, getting on the scales is a very depressing and difficult thing for me. My weight is just a number, and especially for me, not a very accurate one to measure my health and my appearance. I would go by just how my clothes fit, but since developing POTS, I've found that I can retain an impressive amount of water and vary between even 2 sizes in the same day. My solution, I suppose, is to find a way not to care at all. As far as not digesting food how I should... I don't know if part of that is just having a screwed up GI system from abusing it for so long, or if it is truly the POTS and EDS that prevents me from absorbing how I should, but I have funky poo and I've been able to see things get digested very quickly and not well at all, if you catch my meaning (sorry about the TMI ).
  10. I too am worst symptom-wise about 4 days before my period until about day 2-3. I usually have the fewest symptoms right after ovulation until the 4th day before my cycle starts. I have been learning about NFP (Natural Family Planning, basically fertility charting), mainly the sympto method (I've been checking cervical mucus, although one could check temperatures and cervical placement for more accuracy as far as avoiding pregnancy, but since I'm single and have no chance of becoming pregnant, I don't need that much accuracy), and it's been a very fascinating process learning about what my body does depending on the point I am in my cycle. I guess my own symptoms are in line with this study. The early follicular phase is the time period leading up to ovulation and the mid-luteal phase is after up until menstruation. Perhaps part of why I might be feeling so awful right before menstruation is partially the hormones that are released at that time. I also have a period of feeling bad (although not as terrible as when my visitor is here) right around the time I ovulate, usually for about 4 days (2 days before and 2 days afterwards). The human body is a very complicated and complex machine and when just one part goes down, the rest of it gets taken for a ride as well. Until I developed POTS, I hardly had any issues with PMS or other cycle related maladies, but that just another thing I can check off the list.
  11. It wasn't so much bravery as it was desperation that allowed me to get the injections. Like I said in a previous post, it wasn't until the pain and numbness shooting down my arms began affecting my piano and organ playing did I actually seek help with it. I am in the process of making an appointment with Dr. F (she has ALOT of paperwork to fill out before even the first appointment, and my hands are hurting too much lately to even write, so I think that I might just type everything out). It's also a long distance, and I don't do well with either long road trips or plane rides (perhaps a 3 hour flight from where I live). But I suppose that I'm at a level of desperation with everything hypermobility and the joint degeneration that usually accompanies it, that I'll just bit the bullet as best as I can.
  12. I must also chime in and say that it doesn't seem to me either that you are in need of a psychiatrist. I will, like everyone else, say that dealing with chronic debilitating illnesses can be very difficult at times, and that it's great to have someone at least somewhat objective to vent to. I have a spiritual director (the same one I saw when I was discerning a vocation, not that I've completely counted that out, but for right now, I need to get a better handle on how to deal with these illnesses if I am ever to be able to live in a convent). He's very kind, understanding, uses alot of humor, and best of all, he's a priest, so I can get absolution afterwards (only if what I discussed would make a worthy confession, ie, only if I've at least mentioned everything that I can think of that needs to be confessed). As a Catholic, for me it seems that a very thorough confession is worth more than a year's worth of therapy sessions. I especially like the fact that at least my spiritual director seems to have a very holistic approach to everything. He encourages me to see another doctor even if I'm sure that this one is a dud too (I said that about my current cardiologist before I met him, and Fr. convinced me to see him) and is concerned with how well I'm managing with the pain. He also acknowledges psychological and, of course, spiritual needs. When I've had a pity party for too long, he reminds me that I'm not dead yet, so I'd better act like I was living (in a very charitable and loving, yet in an "open your eyes, silly" way ). In any case, I guess what I'm trying to say is that seeing a counselor isn't a sign of "crazy" (whatever that is ). And I have to say having an outlet to talk these things out to someone, who if they don't understand, at least try their best to (I'm somewhat tired of answering questions, but I'm glad that he asks them), has been a great source of healing for me. Now, as far as the neuro goes... That's a bit out of her reach, to "brow beat" you into seeing doctors that you don't want to see, and from the sound if things, waste both your and their time. I would suggest (but this is just me) if she brought it up again, remind her that she works for you, not you for her. I know if that happened to me personally, I would be looking for a new neurologist, but perhaps I just have a very low tolerance to such Mickey Mouse $@**!%^#, especially when it comes to anyone in the medical field. You know your situation better than I do, but I would suggest at least thinking about if changing your neuro is something that needs to be done.
  13. Thank you guys for your well wishes. Initially, it was very difficult, but later yesterday evening (after a POTS crash, however) and today, everything has been feeling about as pain free as it has in a long time. My trapezii are still in a spasm, but I have already been told that I might have to get pain blocks directly into the muscles since they have been spasmed for so long (for at least 3 years... Bad treatment from other medical professionals caused me to just not even mention my neck pain until it became extremely unbearable and it started shooting down into my hands and it prevented me from playing piano and organ... Nice priorities, I suppose). I ended up with 8 shots in my neck, and I have two more injections to do on just my neck, and then a follow-up eval. 2 weeks later. Anyways, why it was so difficult during (and some afterwards) is that since everything has been so painful and tensed up for so long, just barely touching my neck can cause me to jump. I literally started crying (and I can't say when the last time I cried from pain... it's probably been a decade or longer, and I have dislocated several joints, gotten a tattoo right on top of my right foot, had knee surgery twice, one gallbladder surgery after several years of occasionally ending up in ER's on IV fluids, morphine, and pheneragn because of gallbladder attacks, and many, many other moments of pain) by the time he did the second shot. He was really nice about it, and kept asking me if I was ok, and laughed when I said I wasn't, but I wanted to get everything done with so he should keep going. I guess from the bad pain, in addition to crazy weather the past week (wide temperature ranges and several storms and different types of fronts moving in and out... East TN is the one of the worst possible places for a POTSie to live), I ended up EXTREMELY nauseous, shaking, very off balance (I looked like I was three sheets to the wind when I tried to walk, and I had to hold on to my mom walking out of the office so I wouldn't fall on my butt), sweating, very tachycardic (I tried to check it but couldn't, but my pulse felt to be at least 150, if not more. Brain fog makes it hard to count that quickly), and basically all of the lovely cookings of a POTS crash. If I had to stand any longer than I did at one point, I would have fainted. When I got home, I went right to bed and slept like the dead for 5 hours, woke up about midnight feeling somewhat sore, but after putting on my TENS unit with an ice pack, it was pretty much gone. I've been somewhat sore at the injection sites most of the day, but I can tell a very big difference in the stiffness and the pain that comes with movement. I've not rotated my neck this quickly back in forth in almost 2 years!!! I hope that this will alleviate the pain enough to hold off from surgery for several years. I've been told that if the injections don't help with pain, or if they stop helping with the pain, the next step is vertebral fusion surgery. I intend on seeing Dr. Francomano before I even get near that point, and even if she can't tell me what to do for my neck, I know that she'd send me in the right place for answers (or at least just from what I've heard about her). Ah well, I guess I should go to bed and go say hello to the triplets (you know, Winken, Blinken, and Nod?). More neck saga later!
  14. It's funny you should mention Gesthemani. One of my close friends is discerning entering there as a monk. My personal favorite convent is Our Lady of the Angels in Crozet, Va, a Trappistine convent. I stayed there for a week last summer (before the POTS-worsening knee surgery), and since I was discerning, they let me help them with their cheese making, and I have to say that was just a wonderfully prayerful week. And it's funny that I should have mentioned taking a retreat yesterday, since today I received an e-mail from the vocations director of Our Lady. If I were to call it a coincidence, it would be only because I am thinking of Albert Einstein, who once said something like coincidences are when God choses to remain anonymous. Perhaps it's a coincidence that my favorite places as of late are out in the middle of the country, surrounded by cattle fields and where there is no cell phone service
  15. Elfie, I can truly understand where you are coming from. I have had POTS symptoms since I can remember, but after a surgery in Nov 09, everything has gone haywire. I am, too, a student... I took a semester break after my first year of college that ended up being 4 years long, a very big regret, but at least now I'm more focused, or am attempting to be as much as the brain fog will let me, in classes, and I have a purpose. I am a music major (I want a degree in Sacred Music, specializing in Gregorian Chant), and what kills me is that I change my major about a month before my surgery. I took an organ class because I needed a couple more hours, and ended up falling in love with it. Before the surgery, I could play for 3 hours straight (with a few stretch breaks here an there), and completely not realize that I stayed that long. Now, if I can play for an hour or so at a time, it's a bloody miracle that I not faint. Usually at that point, I am shaking, in the early stages of presyncope, and in screaming pain, especially in my neck and back (and sometimes all the way up into my head), and scared to death about going down the narrow 1920's era steps from the choir loft into the first level. There have been times that I've scooted down them on my butt. I also really understand the brain fog for other classes. I am thinking about minoring in sociology or cultural anthropology, as those subjects have always fascinated me since I was the strange kid at 7 who read about it in the encyclopedia for the first time because I preferred to stay inside and read to going outside to play. Now, I have trouble even understanding the directions for something that's supposed to be idiot-proof. One way I cope with this is laugh at it. I can't control what my body does, but I can control how I react to it. And I can only see two choices: laugh at it or cry at it. For the most part, I laugh at it, although a good cry every so often can be theraputic. I also ask a few really good friends (maybe 2 or 3 of them) to do some things for me, especially if it involves picking things up from the floor, or any other POTS unfriendly moves. I follow the motto of "Do what I can when I can, and if I can't, it's OK". I come here and vent, and I also will talk my priest friend. He commiserates with me and lets me vent for awhile, but then after that, he reminds me that I'm still alive, and even if I couldn't live as fully as most, I need to live as fully as I personally can. Throwing myself into as many other non-health related activities as I can. For me, it's music and Church, but as much as possible, taking a break, even a mental one, from illness is an important time of recharging from our already defective batteries. The most important advise I can give is "one day at a time". I know it's easy to start worrying and freaking about the future, especially if something is degerative, but... to paraphrase one of my favorite scripture passages, who by worrying can add another inch to their height. Again, it's another recognizing what I am and am not in control of. Again, I read your post and I have an understanding of how you feel. Post and vent here anytime you need, and I hope you are better able to cope with everything in the future.
  16. Oh, my heart just cries at hearing these stories. I can't believe just how cruel and dense people can be at times. I'm glad that we all have DINET (even if I don't post all of the time, I'm very glad it's here), because at least here, there is great support. My parents haven't always been the best. They fully agreed with my (now former) psychiatrist's diagnosis of bipolar disorder. Yes, I was having mood swings, but you would think that after 7 years of trying different medications and combinations and tweaking a little here, and adding this to take care of the side effect of this other medication, and etc... and the fact that nothing was helping any with decreasing mood swings, and in fact was making the situation much, much worse, because now either I'm sleeping all of the time, or I haven't slept in a week, and of course I'm hallucinating because that's what happens when someone is severely sleep deprived! Even when I insisted that there was something else wrong, I wasn't believed, given my medicine, and patted on the head. From the age of 15 until it was removed 5 years later, I was at the ER a minimum of 5 times a year because I started throwing up constantly for several hours (at least 6, and about every 10 minutes), and couldn't even hold water down. And getting my mom to take me to the hospital was like pulling teeth. "Oh, take this phenergan and lie down," "But, I can't even hold water down, I can't hold a pill down," "Well, try really hard," "MOTHER, TAKE ME TO THE $#&*(#$@ HOSPITAL NOW!!!". She would then, but only after she told me just what she thought why I was throwing up and in screaming pain. She did apologise when my gallbladder was taken out, but I still am very cautious about sharing anything about my health with her. Maybe if I took her to an appointment with me and got my cardiologist to describe POTS to her, she might understand it, and might even believe me. I don't, however, undertand why she doesn't. I wasn't the one that just blew my symptoms off. Ok, so for 5 months when I was in high school, I was convinced I had cancer (I knew something was wrong... I just didn't know what, and I hadn't even started reading much about the horse diseases (you know, the common ones doctors are told about in medical school. "When you hear hoof beats, think horses, not zebras") and I didn't even imagine that I would be such a medical zebra. And I do have an excuse why I was so obsessed with it. Having had all of the bizarre POTS symptoms, and most of them are severe enough to make me think I was dying, I think that entitles me to obsess. Maybe she's getting somewhat better, because she is going with me later today at my cervical spine medial nerve block injections. And she did offer to give me one of her klonapins on the way there. She still rolls her eyes and will change the subject when I do bring up my health (again, another reason why I don't talk about it with her), but she isn't verbally attacking me as much as before. And just knowing her personality, I don't think she'll ever stop that. So, for what's left, I just have to find some way of dealing with it so both of us can keep our sanity. I just wish I knew how.
  17. Thank you Sue and Lieze! I do feel that things are not nearly as dark as before. I am glad that I'm over my temper tantrum and am now ready to live life as fully as I'm able. Nowwhat!, I do understand what you're saying. My priest has mentioned the difference between "feeling faithful" and being faithful to me several times. Usually in conjunction with Bl. Teresa of Calcutta, since she went 40 YEARS without feeling it. I have proven that I can't do that myself, as I only went through about 6 months of feeling nothing but still going to Mass every Sunday, and weekdays when I could make it. Listening to the Gregorian chant, and Fr. teaching us Greek, and the many meanings of the word Paraclete: comforter, advocate... and a few others, but I'm surprised I remembered those (oh, the joys of brain fog!). And while I didn't receive (or even expect) life altering epiphanies, I saw the first glimpses of sacred silence, for perhaps the first time in a year. Before the POTS got really bad, I was discerning a vocation to a contemplative cloistered order and had come to really appreciate and desire that sacred silence. I've missed that almost as much as I've missed my faith. I hope to soon do another week-long retreat this summer. I have a particular attachment to a particular Trappistine convent, and maybe going to such a place will help me refocus and reorder my life.
  18. One problem that can be caused by eating is postprandal hypotension (lowered blood pressure after eating). Basically, when something hits your stomach, it sends signals to the brain to send more blood to aid with digestion. For most people, it isn't a problem. With us who already have problems with pulse rate, bp, and sometimes blood volume, it can cause an increase of symptoms. Although it irritates my heart burn something awful, I do lie down (or at least prop my feet up) after eating. POTS also can effect the automatic muscle contractions that happens in the stomach and intestines after eating. Mine are really wacky, as sometimes it feels like everything just sits there for a few weeks, and sometimes I get to read a big book in just a day, since it seems as if everything is working its way out. All at once. Also, I notice that changes in weather, especially at temperature extremes (very hot or very cold) will cause my symptoms to be worse. Especially if it's really hot and I have to stand for more than just a few minutes, my feet will become a deep reddish purple and start swelling. My internal thermostat is torn up, it seems, and if it's outside of 60-75 F, my body can't tolerate it. I nearly fainted at a wedding a couple weeks ago (and felt presyncope the whole time) because I just got too hot. This will be my first summer since my symptoms really got bad, and I'm somewhat dreading it. I'm already having worse symptoms than normal and it's not even nearly as hot as it normally gets here.
  19. Where to start with my neck problems? Like everything else health-related and me, it's fairly complicated, and has pretty severe symptoms. I have a reversal of the lordosis from the anatomically correct position. Also, from around C3 to C8, there is inflammation and degeneration of at least some part of the vertebrae. Some have facet joint problems, and some have mild to moderate stenosis and degeneration of the disks. Also, all of the peripheral nerves that comes from the spinal cord are very inflamed and it causes great pain from the top of my head (the auricular and occipital nerves, when really irritated, cause a headache that is in every way, except for cause, like a migraine, including aura and nausea) to my shoulder blade. The ones that goes into the trapezii at the base of the neck and down to the shoulder are so bad that the muscles are in a permanent spasm. Some also affects my arms and go all the way down into my fingers, which then gets somewhat painful (mostly burning sensation) but somewhat numb at the same time. I've been to physical therapy, I'm taking muscle relaxers (although I'd rather not... side effects aren't so fun), and the next step is what's going to happen tomorrow (actually, now it's today) afternoon. I'm getting the first set of three injections in my neck, around the disks and the facet joints. They're doing it with fluoroscopy, and the person doing it has done it several hundred times. I am praying that this will work, because I will not take the next step, which is fusing some of the vertebrae together. I guess yet another diagnosis has brought up anger towards yet another medical specialty, this time neurologist. I went to at least two different neurologists, had a few MRI's done, put on a ton of anti-migraine medicine (none of which worked), and then sent off, after that didn't work, with yet another malingering and hypochondriac diagnosis. I'll stop right there before I go on a rant. Anyways, anyone else have horrible neck problems? Any advise on how to deal with that, on top of everything else?
  20. Vanderbilt in Nashville also has an Autonomic dysfunction clinic. I also have heard some good things about Cleveland Clinic, too... I've heard some mixed review about all of the places, but that may be in part due to the fact there isn't a cure, or even across the board successful treatment for it. One of the fun things about dysautnomia is that it also affects how one processes and metabolizes medicine. Therefore, we can become very sensitive to, and even have very rare and strange reactions to medicine. I specifically remember once when I was on lithium (I was misdiagnosed as bipolar for almost 7 years, and I was on psychotropic meds much of the time, but that's another post ), and I guess it should have been a clue that I got toxic on it, even on a below therapeutic (for most people anyways, but my psychiatrist at the time had at least 5 years of experience with my reactions to meds, so he had me on a very low dosage at first) levels... so toxic that I was hooked up to a couple bags of IV saline. I had been drinking almost 100 oz of water a day at the time. I still have such trouble staying hydrated, like many people with POTS. Anyways, my point was that what might work for one person could be the worst possible thing for another to take. And some, like me, have decided to not take medication. I am too scared of horrible side effects, and as long as I stay hydrated, eat plenty of salt, and make sure to tense my legs alot when I'm standing, especially when they start turning dark purple and swelling up (and sit down as soon as possible, but I've been trying to increase my tolerance of activities, and slowly but surely, I'm adding an extra few minutes here and there. Hopefully before long I'll be a least a bit more functional). I took a beta blocker for awhile, and although it helped some with the presyncope and the dark purple legs, I was SOOO exhausted all of the times, even more so than POTS normal. I guess for me, I just weight the pros and cons of each (like symptoms of POTS vs symptoms of meds), and decide which one I can live with better. I can function somewhat better feeling shaky and lightheaded all of the time better than I can if I'm sleeping all day. In any case, I will tell you what someone told me when I first joined... welcome to this autonomic dysfunctional family!
  21. I am not sure the last time I posted here, but I think it was in March or April some time. I kind of needed to take a break from all of the medical reading and research, because I was starting to get a bit despondent and obsessive over everything. As you can tell from my signature (I never changed it), Church is very important to me, but I skipped Mass for two months straight. Yesterday was my first day back, and although the desire to be there was completely absent, I know that if I waited until I felt like going, I might never go back. I know some of this conflict is aggravated by the lovely mood swings that comes with POTS. The other is not coping well with the loss of ability to do things that I love (singing and organ are two prime examples... I've not completely lost them, but going from hours of practice on end to being in near agony after just an hour is difficult to deal with). I suppose add in a bit of a trauma reaction to some of the treatment that I received at the hands of those who are called doctors (incidentally, doctor comes from the Latin for teacher... how can one teach if one knows nothing?) and I've been a sniveling emotional mess the past few months, and I guess I almost emotionally shut down. But, not to worry, going to Church yesterday is a good sign, and the fact that perhaps just a tiny ember of faith has started to renew is very promising. I think the thing that I've missed the most isn't my physical health, or the loss of my music, but the loss of my faith. I kind of suspect that I could be with those and be without faith and still be suffering severely. In any case, I'll sign off here, and say that I'm very glad to be back. I've missed DINET, and I can't wait to read the old threads I've missed, and hearing from each of you.
  22. If it weren't for the fact that I have Barrett's esophagus along with everything else, I would never go to a GI again. In my experience, they are usually the ones that if nothing is easily forthcoming on the smaller tests (aka, ultra sound, CT scan), they don't bother with the fancy tests (like a HIDA scan or a gastric emptying study). Because of at least 3 horrible GI's (I'm only counting the "it's psychosomatic" ones with that... then there were others who just scratched their head when I told them I'd been in and out of ER's constantly for IV phenergan and morphine from all of the stomach pain and vomiting and didn't try to think of a solution), I would have never gone back to one, if I hadn't been almost incapacitated by severe heartburn (like, actually throwing up just stomach acid bad) and more stomach pains, I wouldn't have sought out another one. I think God had great mercy on me, because this is the same GI doctor who recommended that I undergo a HIDA scan after my last severe gallbladder attack. Since I was in the hospital on alot of morphine and in so much pain still, I didn't remember her, but she remembered me (or at least found my old chart). My cardiologist is wonderful, and the nurse practitioner at the back and neck pain clinic is simply great. My attitude towards them before I actually saw them was just terrible. "This will be a waste of time, they're going to call me crazy, they're the crazy incompetent fools!"... etc. I'm glad that they have been able to earn my respect and at least some of my trust. Experience has told me that everyone drops the ball at least occasionally, so I haven't given my explicit trust to them, but I'm less likely to convene the Spanish Inquisition to meet with them. I guess with a somewhat growing trust in the medical profession again (I know there are good doctors out there, I just have to be patient and persistent to find them), I find it ironic that now that they are doing their job (I've racked up 4 new diagnoses so far this year! And after my own research, I agree with them), I am starting to not like them again. It took 5 years for them to figure out gallbladder issues, but now it seems that every new appointment, there is something else that is wrong, something else I need to learn how to live with, and I suppose that it's just somewhat overwhelming at times. My cardiologist and my NP both take the time at every appointment to ask me how I'm doing, not just my dx's, but just coping with life in general. And they don't rush when listening to the answer. And if I've had a rough time, they offer encouragement and occasionally helpful advise (like taking a break from reading about everything, as it was overwhelming me the most). Like others have posted with this thread, I have learned to trust my own instincts. They were right when my gallbladder shut down, they were right about the POTS, EDS... basically, I researched it before hand, and these medical professionals have just confirmed it, written it down on paper for insurance purposes, and have affirmed my own knowledge and intelligence. I have to say that when I went to see my cardiologist for the first time, I already knew that I had POTS, so to prepare for the appointment, I printed off some information here at DINET, and I think Vanderbilt's website... I didn't get a chance to use them, except to show my doctor why I was laughing so hard at such a serious diagnosis. And he was happy that I had done my own research, even if he did admit it can cause some problems. So, to sum up, I trust them less, I trust myself more, and I'm very grateful for the good doctors I have. I hope everyone has cloned versions of my doctors on their medical team.
  23. Hello Kim, I just turned 24, and I think I was about your daughter's age when my symptoms started getting really bad. I fainted a few times, but almost every time I stand up, I got what is called presyncope, basically my body gets flushed and tingly, my stomach starts cramping really bad, I start getting either tunnel vision or everything goes kind of grey and fuzzy and I see stars, and I start shaking like crazy. If I don't sit down within like 20 seconds, I have a good chance of fainting. Anyways, it sounds like, with what you have described, that you are on the right path as far as her health goes. I wanted to also say just how glad I am that you are taking such a proactive role in helping your daughter. There has only been a handful of times in my life that my mother has actually taken me to the doctor or the ER (outside of yearly checkups) without me having to basically plead and guilt her into it. I may have been throwing up for 10 hours straight (and couldn't even keep water down... gallbladder attacks are very fun), but unless I was near death, I wouldn't be going. One thing just occurred to me, too. Does your daughter have acid reflux and stomach pains at other times except when she's near syncope? I have noticed that a high percentage of people here have had gallbladder issues, and the worst of my gallbladder issues started at around age 15. I hope that your daughter is soon able to find relief from her symptoms. If you are anywhere close to Knoxville, TN, the Knoxville Neurology Clinic has an MD and a PhD on their staff that treats and tests for autonomic dysfunction. Stephen Rider, MD treats it, and Ronald Leppanen, PhD, I believe, still test for it. He did the last time I checked (about 6 months ago). Also, I can give you the name of my own cardiologist. He is very good, very thorough (he spent 10 minutes having me lie down, sit up, and and stand up while checking my heart rate and bp), and he is refreshingly honest. He told me the last time I saw him that he felt somewhat frustrated in treating me, since there hasn't been a "miracle pill" for POTS and dysautonomia yet, and he felt somewhat helpless that he couldn't do more at this time. He has 10 other POTS patients, too.
  24. I believe that my POTS is secondary to JHS and other collagen deficiencies... since normal collagen causes blood vessels to constrict upon standing, and with JHS and EDS that sometimes doesn't happen as it should, it would make sense that moderate alcohol and other vasoconstrictors helps with symptoms. I would say that it would depend on the subtype or cause of the POTS as to how vasoconstrictors would help. Just to add, I've had a horrible sinus infection/bronchitis (and I hope not pneumonia.. PLEASE) the past little bit, and I have been using some "home remedies" (basically mint tea, lots of lemon juice and honey, and a half-shot of either rock & rye or whiskey), or some type of cough syrup with a 10% alcohol content, and... well, the POTS isn't GREAT, but it's not as bad as it normally is when I'm sick. Perhaps a bit anecdotal, but hey, whatever helps symptoms.
  25. I have an occasional beer... before my POTS got much worse, I would have at least 4-5 in one sitting.... now I get the same effect with only one, so I will make sure that I eat with it, and space it over an hour or so period. As long as I make sure that I stay hydrated, I have no ill effects at all, and in fact, I have some positive effects. I also smoke regularly... I can tell when I don't smoke my normal amounts, since my POTS symptoms get quite a bit worse. I suppose it's because my POTS is caused by the hypermobility syndrome, and so the blood vessels in my legs don't constrict like they should. I imagine that the vasoconstrictive properties in nicotine is what helps with the symptoms.
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