bebe127

I am sorry you feel so alone, but trust me (and the previous responses), you are NOT alone. I would definately keep seeking until you find a dr. that will help. Dr.s tend to give a dx of anxiety when they don't have any other answers and unfortunately, most dr.s don't seem to have the time or patience to help you on your journey to wellness. All too many times, they just want to throw meds at you to treat the symptoms without a clue as to what the root cause is. This is so unfortunate. I've been dealing with this for 3+ years and still really don't have any answers. My GP treats me with a BB and Xanax. They seem to do as they are intended, but I still deal with the myriad of symptoms daily. One EP I went to who was supposedly an expert put me on an SSRI which I couldn't tolerate, then when I went in for a follow up told me that I should probably seek out a dr. closer to home and look into therapy. I am still on the search for a dr. that understands and that is willing to work with me to get to the root problem and help me. Don't lose hope!! There is someone out there that can help you, it just might take some time. Try to have patience and perserverance (I know this is so much easier said than done). Here is a library of articles that might be helpful: http://www.dysautonomiasos.org//journalarticlelibraries/PosturalTachycardiaSyndrome.pdf Here is an article from a former Neuropsychologist and fellow Posty: http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox Hope you get some answers soon.

Pumpkin, I deal with chest pain daily, but I'm with Kaybug, it might be too soon after surgery to tell. I've asked various dr.s to no avail...here are some of the brilliant responses I've gotten in the past: "You're too young to have heart problems.""The pain you're feeling has nothing to do with your heart or POTS.""This will not hurt you.""Your tests are all normal.""Maybe you should seek out a therapist."I agree too, although haven't seen the thread on this, that one would almost have to experience some sort of chest pain if our bodies are trying to pump blood where it needs to go, either working over-/under-time. Hope you get some answers. I would always consult the dr. with your concerns especially so soon after surgery. Feel better

I have wondered this for years. I even had one EP tell me that since I don't faint, I have a mild case of POTS, and this was supposedly a specialist in POTS (at the end of that visit I was in tears as he was telling me that I probably needed to seek out therapy)! I now try to take articles into the dr. so that I can refer to them if need be without trying to step on any toes while I'm at it. I wish dr.s would get on this site (or any other dys sites) where they could possibly educate themselves. I think by now most of us ought to be able to get grandfathered in as MD's The only explanation I have is pure ignorance, and it's such a shame as there are so many of us looking to these dr.s for answers, and most of the time we just leave with more questions.

I'm so sorry you're feeling this way:( So wish I was there to hug you and tell you everything will be alright! But truth be told, everyone is so different and throw a new baby into the mix and I'm sure everything is just overwhelming for you. I can't answer most of your questions accept the anxiety/panic one. When I get this, I feel jittery, shakey, and tingly all over. I can feel the tingly feeling as it crawls up my extremities and into my head. My heart starts racing, I feel like I'm gonna hurl and I have to lay down, like, right then. Afterwards, I feel so tired, like I could sleep for days. It is an overwhelming feeling and scary too. I don't really have any advice other than to lie down and take deep breaths (inhale and then exhale slowly) and try to relax. I know it is so much more easily said than done. I usually sing a song in my head over and over until I can feel some relief (and I pray alot too). Mine comes out of nowhere as well, but I do believe that our minds can do amazing things to us--sometimes negative and sometimes positive. I find that if I try to dwell on the positive (I do know how hard this can be) and not on all the worrisome questions we have, things do get better and I feel more calm. I get very scared and worried too when taking anything new. I try to "try" new things on the weekend when someone is home with me and can help me if I need it. A few years ago I saw a therapist and she recommended a book called "The Anxiety & Phobia Workbook" by Bourne. It has lots of helpful tips as well as detailed explanations of both. Although it is not geared toward POTS, it was helpful and I go back to it often. I so hope you feel some relief soon. My heart goes out to you!

Sarah, So sorry if I caused you undue stress not my intention at all. But now, I too will be looking at my results more closely. I have a physical in the spring and I will definately be going over results with Dr. one by one. I think it's important to note that everyone is different. Dr.s tend to keep us in their little box and if we stray from the textbook we're SOL! I always think of it this way...yes, the normal range for so-and-so (add any test here) is this, but what if that is not normal for us (not "us" as Posties but "us" as in a general human)?? For instance, during my first and only ER visit, my potassium was low. Now for one person, this might not affect them in any way, but I'm me and it might affect me differently. Am I making any sense?? At any rate, we are all different and have different norms. Sorry I can't be of more help. {{Hugs}} Bebe

So sorry to hear of your experience Ash As if it is not bad enough we deal with all these funky symptoms and feel crappy most days and to then get treated the way you were treated. So many doctors seem to have skipped the class on bedside manner when in med school. My heart goes out to you. Hope you get to feeling better soon. {{Hugs}} Bebe

Naomi, Yes, been to an ENT and like most of my other dr. appts....there is nothing, I'm perfectly fine! I agree too that it is the least of my complaints. Just wondering if anyone else deals with it, and now I know that yet again, I am not alone Good to know!!

Thanks Kelly I have had my ears checked and nothing seems out of the ordinary. I also have experienced trouble hearing (my kids think I'm deaf) and at times have to resort to lip reading which can be kind of awkward depending on who I'm speaking with! My kids always think they are clever when they cover their lips while speaking to me. Oh, the joys of motherhood! Over the years, I've complained of this and no one can ever figure it out. Guess I just have to chalk it up to one more symptom that I can't control. I am now in the habit of watching Netflix at night until I can't keep my eyes open any longer and sometimes I fall asleep only to wake up and find that I'm laying on my nook I can't just lay there and go to sleep with all the crickets in my head because I end up just clenching and unclenching my jaws (this changes the pitch) to the tune of various songs and it keeps me awake!! I should look into a noise maker, for lack of a better term, to get to sleep at night, but that just might have to wait until the series I'm watching on Netflix is over

Anyone have this??? Ringing in the ears. I think I've had this for quite some time, although over the last three years it's gotten worse. I've read about it a bit and how one can have this because of bp. I'm wondering if it's the bp or if it can be a side effect from meds or what. It drives me crazy, especially at night when all is quiet, hence my intimate relationship with netflix on my nook! Any ideas??

Thanks pumkin, I think I'll just stick to the trace blood and leave it at that! I don't want the fun scope, my dad has had to have this multiple times...not fun at all!!

boymommy3, So sorry you are feeling this way! I too, am having one of those days/weeks/months...Can I hide with you? I homeschool too, although I only have two and they are teens and fairly self sufficient. I still work with them, though from my bed these days. I'm not sure if we can post book recommendations, but here goes: One of my "go-to" books for inspiration, encouragement and a boost in faith is, "Jesus Today" by Sarah Young. She lives in Australia and has/had Lyme with related chronic illness, so she knows where we are coming from. So many times I open her book and it's like I was lead to that particular reading. Does it cure my POTS, no, but it does put me in a better, more positive state of mind and I can feel the peace as it comes. Another book I've been reading is, "Coping With Chronic Illness" by H. Norman Wright & Lynn Ellis. It is written from a Christian perspective and has been a tremendous help to me. After all, we may feel helpless at times, but we shall never be hopeless I hope that you get to feeling better soon. Remember, you are not alone; that's what is so great about these sites. We can vent, commiserate, share victories, and encourage others while getting encouraged ourselves. Blessings to you and yours

MomtoG, A UTI for four years?? Yes, I too, have heard that one can have a low level infection without signs. My mother, may she rest in peace, had infections all the time that never showed on anything. ophelialit, Interesting about the MCAD. I've been reading a lot about this and am concerned. I'm going to take some literature into the dr. next time I go and ask about it. What type of dr. should one see regarding MCAD? Thanks guys

My dr. might have said something about a uti, but I had no other issues ie: burning, etc. and bloodwork showed no infection. Weird!! I try to stay away from googling too as most of the time all it does is raise my bp and makes me more worried. I will ask again when I go to dr. Would love to know if there is a connection somehow. BTW, this started the year before I was dx. I went in for tachy and they took blood, that was the first time I was told about the trace blood. Nurse said it probably had something to do with my cycle. However, I don't have a cycle anymore as I have an IUD (sorry if TMI). Anywho, I hate it when dr.s just don't seem as concerned as we are about these things. It's like...don't know...don't want to find out...deal with it. UGH! I am of the thinking that there is a reason for everything and usually there is a root cause, I just wish dr.s would take the time to find out instead of just treating the symptoms and/or ignoring it altogether. Alright, I'll get off my soapbox! I'm with you...any ideas guys??? Hope you are well

For the last four years, my urine tests have come back with trace blood. Dr. doesn't seem too concerned. He did have me go in for x-rays/sonogram on my kidneys and bladder over a year ago (tests didn't reveal anything abnormal), but that was because my father has/had bladder cancer. Still have trace blood in urine. Will be getting yearly physical in a few months and I am anticipating the whole trace blood thing. Anyone else have this? Like I said, dr. doesn't seem too concerned, but I'm fairly certain that most people don't go around with trace blood in their urine for no apparent reason! Not sure if I should be concerned or not, although I'm putting on here, so I guess I am a bit concerned. Thanks for any insight.

k&ajsmom, I am right there with you unfortunately. I am having a "pity party" kinda day/week/month myself. I too want my old life back. I guess the saying "you don't know what you've got until it is gone" is so true for many of us; I know it is for me. I've had such a rough go of it for the last month. It is all I can do to get up in the am and get going when all I want to do is stay in bed all day and not be bothered. I toy around with the idea of seeing a new dr., but it's such a hard decision to make. Do I go with a positive attitude that he will be able to help me only to be totally deflated when he says there is nothing he can do as this is the way most of my dr. appt.s end up like??? I so need to try to cling to the hope that I have through my faith, but it is so hard on days like this. I usually try to be so encouraging, and I want to be, but today is just not one of those days. I'm so tired of living in a constant state of fear. Noticing every little bodily change. Wondering, wondering wondering if this will ever go away, or if this is just my lot in life and I need to get off my pity pot and be thankful it's not something worse? UGH, I hate this life with POTS! It makes it that much harder to bear when others aren't so understanding. My husband is lovely and supportive, but I know that he gets frustrated, not with me per se, just in the fact that he can't "fix" me. I want to be "fixed". I want to feel normal again. I want to find joy and have joy. I want rest and peace. Most of the time I try to busy myself so that I can try to forget I am sick. Sometimes it works and other times it doesn't. Today is one of those days that it is not helping. Someone PLEASE let me off this ride!!! Sorry to rant on top of your rant. I do think that sometimes we do have to be a bit selfish and not take crap from anyone. Sometimes we just need those moments to ourselves, to grieve, to be angry, to be depressed, as long as we don't stay there too long. I need to remember my own mantra: I may at times feel helpless, but I am never hopeless. I cling to the promises of God. May you be blessed today

Abbyw, I rarely have a "good day". I really don't know what my normal resting hr is, before POTS, I never even gave bp or hr a second thought. If I had to guess, I would probably say in the low 70's and gets lower when I sleep. Unfortunately, it doesn't matter if my hr is in the lower 70's or the 140's, I still feel bad. Not much help here, sorry. Hope you feel better

Hubby has Gerd as well as Barret's Syndrome and is on Omeprazole w/bicarbonate extended release. He definately knows when he's missed a dose. He takes 40mg. 1x daily.

Thanks so much Leigh8!! I thought there was a site for kids affiliated with Dinet.org. I have a friend who's daughter was diagnosed with Dysautonomia (she was also born with 3rd degree heart block) and this will help her tremendously, I hope

I thought I had seen a site that was called Dinet Kids. Am I wrong? If not could someone give the link? Thanks, Bebe

Thanks pumpkin

Thanks Sarah, Praying is my first go-to! I just get so sick and tired of being sick and tired and having my family have to deal with it all too; It's just not fair to them. Praying for you and thinking about you often. Hope things are well with you Bebe

Sarah, Altruism and boymommy3, Just got another one this morning. It wakes me out of a sound sleep. I guess the best I can describe it is tremulousness. I feel like my insides are shakey, going a mile a minute, but my hr is fine. It's like some thing is vibrating on the inside, all over, like I can feel the blood rushing all throughout my body. It's just weird and I don't like waking up like this. It passes within a few seconds. I just don't get it, and I too, Altruism am so done with this!!

I too have had changes over the years. I began with high blood pressure, now it is on the lower side. I have other changes too, but the list is too long. Mine are kind of like yours although I started out with high bp. Don't know if the changes are from meds or I'm just getting used to them and don't notice that much anymore. I also have some new symptoms like, rushes in the early morning, pains out of nowhere, more chest pain, vision issues, night sweats and more. Still, I don't know if these are due to meds or what. I created a table on my computer listing all of my symptoms and catagorized them by frequency ie: always (daily), frequently (5-6x/week), sometimes (2-3x/week), rarely (1-2x/month) and never/don't know. My goal is to review this list each month and make changes as necessary although keeping original copy so as to compare. My hope is to be able to take this into the dr. for some type of evaluation or at the very least he can see progression/regression. From what I've read here and elsewhere, symptoms seem to wax and wane. Hope you get some answers soon. Bebe

joyagh, I will ask my GP or new EP (whichever appt. comes first) about an endocrinologist. I also don't know what type of POTS I have. No dr. has ever suggested there is more than one type, nor have they suggested finding out what type I have, how I may have gotten it, if it will go away or any other tests to rule anything else out. The only way I know about some of the different types is from this forum. I only know about Dinet.org because my dx. dr. gave me printouts from the site the day of my TTT and dx. Sometimes, I just want to go see a new dr. and not show them anything, just explain what's going on and have them take it from there. I always go to the dr., especially a new one with all my records and test results. They usually glance over them and concur with the dx dr. and that's it. My GP has suggested some type of heart mapping (not sure what it is called) and referred me to a cardio. I emailed the cardio asking if he treated patients with POTS. His response: "My experience with this is limited. [Your dx dr.] likely has seen more cases than myself. This is a rare condition and as such we see little of it. I think with [dx dr.] you are in good hands." What this cardio didn't know apparently was that the dx. dr. only diagnoses, he does not treat, nor does he know of any dr.s that do treat this illness.

I couldn't agree more Allomenteer! These morning episodes are happening while I'm sleeping. I'm not anxious or worried, I'm too busy trying to sleep. They just come out of nowhere and I can't recall experiencing this previously. What I just experienced when taking my daughter has more (I think) to do with my worrying thoughts of "oh, my, I have to take daughter and I don't feel good, hope I don't pass out, or hurl or both". Plus it is a different feeling than my morning wake ups. I wish it wasn't so hard to explain.