kim5204 Posted July 5, 2013 Report Share Posted July 5, 2013 I still get high heart rate even at rest though so I dont know what to think but in am gojng to mention it to the neuromuscular doctor the end of the month. my gi and primary and internalist dont think it could cause problems but I would lkke for them to put it back where its suppose to be it sits on my bowel on the ultrasound. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 5, 2013 Report Share Posted July 5, 2013 Very interesting. Are they aware of the medical knowledge confirming the problems it can cause such as in the links i posted? If i recall, one of them said it can cause gastroparesis, colitis, constipation, 'appendicitis' because it bothers the organs it sits on when it moves. I have a high heart rate laying down too sometimes, though only when my 'pots' is bad and it coordinates with a variable blood pressure. im wondering now if all of those times were deitl crises and not a pots flare. Might explain why i felt like i was literally dying. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 5, 2013 Report Share Posted July 5, 2013 Ok, here we go. My symptoms:When standing: Tachycardiashortness of breathchest pain and upper back or shoulder pain that travels up the the sides of my neck, jaw and head,makes me clench my teeth sometimesdizziness/swimmy headconfusioncog issuesgreying outtight feeling around chesttight feeling around diaphragminability to breathe from diaphragm-hyperventilateblood poolingweaknessfatiguewhen laying down:usually no symptoms unless i am really bad. if really bad:shortness of breathweaknesshypersensitivityfeel like i want to die-not because i want to but because then i wouldnt feel so bad-i dont really want to die, it just feels like im going to because i feel so bad with no explanation.whole body feels sick, like nausea but no vomiting and not localized to only stomachtachy upon changing positionshortness of breath on changing positiongeneral:weaknessfatigueheat intolerancesweating problems-i usually dont sweat even when i shouldno upper body stregnthcant push/pull/lift with upper body, too weak, exhausts mestairs kill me-tacky, breathingworse tachy when peeing sometimes-have to check this as bathroom is upstairs-stairs or hydration?blood pressure 90/50 to 120/80 resting pulse usually in 60's, lower when very relaxed and sleeping and higher when not wellwhen not well resting pulse in 90'ssit with feet up or leaning forward slightly to be comfortable breathing and tachy wisedrive with seat tilted down in back and leaning forwardcant do anything with hands over headnon angina, angina like chest painsGI:upper abdominal bloating/fullness after eatingconstipationfood sensitivities but cant determine to what. Carbs especially and can only eat a couple bites unless i can lay down.must lay down after a meal. can not physically stand. sitting difficult.cannot tolerate most foods during the day so i dont eat during the day, at night, reclining and laying down, i can eatanorexia-not nervosa typeI think i irritated something now because of that as heart beats weird with swallowingmostly living off coffee and cigarettes - weight lossUrinary:hypovolemia -not newnew-sometimes pee out as much as i take in almost as soon as i take it innew-cant keep hydrated in heatOther-all sporadic:sweaty palmschillscant get warmoverstimulationheat intolerancereynauds symtomsfeet and hand tinglingnausea -but not the vomiting kind-an overall all body nauseous and sick feelingchemical and drug sensitivities-not sporadic at all but worse when ill or physically stressedAnd now, drumroll please..... The non physiological mystery lump that is all in my head is..... A dropped kidney! Ta Daaa!!!!Symptoms alleviated by holding up said kidney while standing:tachycardia!I can breathe from my diaphragmI do not hyperventilateI do not get dizzyI do not get brain fogI do not feel like I am going to pass outI do not have a tight feeling around my chest-except where pushing on kidneyI do not have chest pain or upper back pain or that weird pain like sensation that crawls up shoulders and the sides of my neck and headi do not feel like i am going to pass outi do not grey outi do not pass outNew symptoms while holding up said kidney with hand:My hand really hurts - its hard to squeeze my side hard enough to keep it upKidney becomes aggravated and aches when too many people poke around at it and ask me to hold it up and drop it and mush it aroundAfter mushing around said kidney and having it examined and held in different places for 2 days straight, kidney hurt and i almost passed out 4 times the next day - much quicker and with much less warning than usual. I caught myself on the way down as sight went. am being very careful.I think thats it, ill come back and add more if i think of anything Quote Link to comment Share on other sites More sharing options...
kim5204 Posted July 5, 2013 Report Share Posted July 5, 2013 I am having all the same symptoms will bring this with me to the appointment. thanks how soon are they doing surgery? Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 5, 2013 Report Share Posted July 5, 2013 kim, i hope this is an answer for you too and that would be wonderful! Im not sure about the surgery. I have an apt with a surgeon on monday and Im on call for the dysautonomia clinic for more testing. Quote Link to comment Share on other sites More sharing options...
kim5204 Posted July 5, 2013 Report Share Posted July 5, 2013 let me know! Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 6, 2013 Report Share Posted July 6, 2013 Is your POTS doc a specialist in POTS? One who might be willing to write up a case study and submit it for publication? Would be great if he/she would so other docs might be more willing to consider this. Quote Link to comment Share on other sites More sharing options...
kim5204 Posted July 6, 2013 Report Share Posted July 6, 2013 what is thd name and number of the docotr that thinks it causes all the problems I am going to shown this to my gi. thanks. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 6, 2013 Report Share Posted July 6, 2013 Chaos, My doc handling this is a dysautonomia specialist and i think this is going to be written up. thats part of the reason im going in for more testing and asked everyone here to let me know if there were any tests they wanted me to have done or thought were relevent. im going to make sure as many as possible are done before this is fixed so if simple blood tests can detect this, everyone knows what to ask for.Kim, i cant give out the name without permission. Ill ask though and im going back to ask more questions about how this works and ill post that info when i get it. Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 6, 2013 Report Share Posted July 6, 2013 Thanks for doing all this Maia! Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 6, 2013 Report Share Posted July 6, 2013 Its my pleasure Chaos! Thank you. Quote Link to comment Share on other sites More sharing options...
davecom Posted July 6, 2013 Report Share Posted July 6, 2013 Agreed, a case study would be very helpful. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 7, 2013 Report Share Posted July 7, 2013 Maia, that is GREAT news that you found a definite link to your POTS symptoms!! I am like the others in hoping they use you for a case study so that others of us will have leverage to ask to be tested.When you first posted, I was going in the hospital for a 3-day fast, testing for my hypoglycemia issues. In the beginning I found this great old article, but got too weak to respond to your post. But now I will link it at the bottom.Anyway, I am unlike most people here in that I am short and my weight is around my abdomen(thanks to my high insulin for all these years). I'd like to mention that I am hyperPOTS also, with my blood pressure and heart race increasing as I stand. Anyway, since POTS began, I am unable to sit straight up anymore. I can't explain what happened, but I reached a point that sitting straight up in a chair would cause my heart rate to increase and I'm sure my b/p was increasing, too. I would begin feeling VERY lightheaded and anxious. That's when I bought a semi-reclining lawn chair that I bring anywhere I have to go outside of my home. It gives me the right "slump" so I don't have to sit upright.My point is, something has been bothering me in my upper abdomen for a few years, and it affects my vital signs if I am in the wrong position. It's amazing how many doctors visits I've been to with my chair, and not ONE doctor has asked me why I sit in that chair. I have had nurses ask and I give them a simple answer. So, I could see where kidney position issues could be a contributor. I will have to see if I can even begin to have a doctor look into this.Here's a quote from the end of the article:(sorry, it won't copy/paste correctly, but it is only two sentences. The link is afterwards)"Thepossibilityofsomedegreeofcompres-sionoftherenalarterybytherenalveinhasbeenmentioned.Werethisthecase,akindof"postural,intermittentGoldblatt36mecha-nism"wouldbeestablished.ThismightofferCanexplanationforsomecasesoforthostaticorposturalhypertensiondescribedinmedicalliterature. http://circ.ahajournals.org/content/18/6/1131.full.pdf Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 7, 2013 Report Share Posted July 7, 2013 Great article Sue. It just makes more and more sense to me and this article touches on something not mentioned in all the others ive found. If my kidney has fallen and is still attached its pulling on all sorts of things, why not compress or wrap up some veins and arteries on the way down. Shaking my head right now too. I really think all the times ive felt like death were deitl crises. Thank you for posting this. I hope your stay in the hospital gave some answers for you. Can you get yourself to a kidney doc? I wouldnt take no for an answer at this point. Im the same with sitting, cant do it. feet up, leaning forward or reclining and now im being super conscious of all of this because im firmly convinced that my tachycardia was my body screaming for me to listen to it. Lay down, something is wrong! And im so glad i didnt take all the symptom masking drugs except now the more i read the more it seems norepi may not be good for your heart. ug. I hope you find a way to get to a kidney doc soon.Just google goldblatt mechanism and found this. Interesting: http://www.springerimages.com/Images/RSS/1-10.1007_978-3-540-35280-8_1204-0 Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 7, 2013 Report Share Posted July 7, 2013 Hmmm, and hasn't there been previous talk about some having an angiotensin issue? And, not knowing why? Sounds suspiciously that it could be connected.I found this article, and I immediately thought of you holding your kidney up!http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1022808/?page=1 Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 7, 2013 Report Share Posted July 7, 2013 Ha! Great article. Could be connected? Ha again! And did you see the date referene on the bottom? 1956. And it was taken out of the textbooks despite 20% of women whaving this problem. Unreal. I hadnt read a post about angiotensin, but that is one of the things i want tested. My mind is just blown. I have always known that kidneys control your blood pressure but having mine never go above normal and being usually low I never made the connection(and i suppose, why would I having never been to med school). How infuriating that we have to be our own doctors while under the 'care' of doctors. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 7, 2013 Report Share Posted July 7, 2013 As I was reading about "nephroptosis" (the official name of a dropped kidney), it is evident that doctors took it seriously up until the mid-1900s, and then sort of relegated it to a psychosomatic problem and threw it to the wayside. It occurred in 20% of women(most with no symptoms) and only 5-6% of men.The main connection from back then regarding nephroptosis was that the patient had orthostatic hypertension!! Why haven't doctors looked at our kidney placement in all of us showing orth. hypertension on our TTT???? That just floors me!Naturally, something that is going to affect women and not be clearcut is going to be dismissed. I think I can assume the majority here have some form of EDS and the majority are tall and on the thinner side. This demographic is exactly the people that would get nephroptosis, due to not enough "fat" to hold the kidney in place plus lax ligaments, etc., that would help stabilize the kidney.A lot of people here talked about having been avid runners prePOTS. What if the running was the straw that broke the camel's back, in that the kidney fell from that last run. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 7, 2013 Report Share Posted July 7, 2013 Its infuriating. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 8, 2013 Report Share Posted July 8, 2013 Maia - do you have Postural Hypertension? I do remember reading about that in articles about Nutcracker Syndrome and in Sue's article above. It was the one thing that did not fit for me, but I don't know if it's a requirement. Do you have this? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 8, 2013 Report Share Posted July 8, 2013 Also meant to say my BP is usually low, not high. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 8, 2013 Report Share Posted July 8, 2013 Naomi, I dont have 'hypertension'. My blood pressure has always been what is considered low. Since having it checked a lot since this 'diagnosis', i do know it goes between about 90/50 to 120/80 that i am aware of. I recall on the tilt that when i lifted my kidney I heard it said that my blood pressure went down. I also recall after a recent stress test that when i sat down my blood pressure went down -they were concerned about this because apparently it went to about 90/50. Interestingly,I always feel better when they are concerned that my bp is low. I wonder if my normal is still around 90/50 and it goes up when standing because of this. Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 8, 2013 Report Share Posted July 8, 2013 A digression, but this is odd and sounds contradictory to what ive heard before so i thought i would add it for anyone interested: 'Neurally mediated hypotension mostly affects young people, and it seems to occur because of a miscommunication between the heart and the brain. When you stand for extended periods, your blood pressure falls as blood pools in your legs. Normally, your body then makes adjustments to normalize your blood pressure. But in people with neurally mediated hypotension, nerves in the heart's left ventricle actually signal the brain that blood pressure is too high, rather than too low. As a result, the brain lessens the heart rate, decreasing blood pressure even further. This causes more blood to pool in the legs and less blood to reach the brain, leading to lightheadedness and fainting.'Causes the heart rate to slow? so where does the tachy come from then? http://www.mayoclinic.com/health/low-blood-pressure/DS00590/DSECTION=causes Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 8, 2013 Report Share Posted July 8, 2013 Here we go! 'visceral autonomicnerves stimulation'http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2008.08082.x/pdflets connect the dots shall we? ...'Renal arterial stenosis (narrowing of the kidney arteries) with nephroptosis (kidney drops on standing) have been known to cause orthostatic hypertension.[11]' and 'Aortitis (inflammation of the aorta) with nephroptosis: "This orthostatic hypertension largely may be due to an activation of the renin system caused by nephroptosis and partly due to a reduced baroreflex sensitivity caused by aortitis"[12]'http://en.wikipedia.org/wiki/Orthostatic_hypertension'Fifteen (68%) patients had abnormal autonomic function tests. Out of these patients, 14(93%) had abnormalities of the parasympathetic system and only one had abnormalities in the sympathetic system.'http://www.ncbi.nlm.nih.gov/pubmed/8062774http://www.ncbi.nlm.nih.gov/pubmed/15711371The results indicate that sympatho-adrenal activity is essential in the production ofrenal vasoconstriction...t this response is normally produced by the synergistic action of increased sympathetic nerve activity and humoral effects, including those of the adrenal catecholamines.' http://circres.ahajournals.org/content/20/6/676 Quote Link to comment Share on other sites More sharing options...
TCP Posted July 8, 2013 Report Share Posted July 8, 2013 Maia...your story is incredible. I hope you can get it all sorted out and get your life back or as it should be. I hope for this for you. Keep us up to date with your story. I read your symptom list and ticked off all of the symptoms that we share. Almost identical. I have pain around my gallbladder and have a gallstone. I am waiting to get it scanned. When standing: Tachycardia üshortness of breath üchest pain and upper back or shoulder pain that travels up the the sides of my neck, jaw and head,makes me clench my teeth sometimesdizziness/swimmy head üconfusion ücog issues ügreying outtight feeling around chest ütight feeling around diaphragm üinability to breathe from diaphragm-hyperventilate üblood pooling üweakness üfatigue üwhen laying down:usually no symptoms unless i am really bad. if really bad: üshortness of breathweakness ühypersensitivityfeel like i want to die-not because i want to but because then i wouldnt feel so bad-i dont really want to die, it just feels like im going to because i feel so bad with no explanation.whole body feels sick, like nausea but no vomiting and not localized to only stomachtachy upon changing position üshortness of breath on changing position ügeneral:weakness üFatigue üheat intolerancesweating problems-i usually dont sweat even when i should üno upper body strength ücant push/pull/lift with upper body, too weak, exhausts meüstairs kill me-tacky, breathingworse tachy when peeing sometimes-have to check this as bathroom is upstairs-stairs or hydration?blood pressure 90/50 to 120/80 üresting pulse usually in 60's, lower when very relaxed and sleeping and higher when not wellwhen not well resting pulse in 90's üsit with feet up or leaning forward slightly to be comfortable breathing and tachy wise üdrive with seat tilted down in back and leaning forwardcant do anything with hands over head ünon angina, angina like chest pains üGI:upper abdominal bloating/fullness after eating üconstipation üfood sensitivities but cant determine to what. Carbs especially and can only eat a couple bites unless i can lay down. ümust lay down after a meal. can not physically stand. sitting difficult. ücannot tolerate most foods during the day so i dont eat during the day, at night, reclining and laying down, i can eatanorexia-not nervosa typeI think i irritated something now because of that as heart beats weird with swallowing ümostly living off coffee and cigarettes - weight lossUrinary:hypovolemia -not newnew-sometimes pee out as much as i take in almost as soon as i take it innew-cant keep hydrated in heat üOther-all sporadic:sweaty palmsüchillsücant get warm üoverstimulation üheat intolerance üreynauds symtomsfeet and hand tingling ünausea -but not the vomiting kind-an overall all body nauseous and sick feeling üchemical and drug sensitivities-not sporadic at all but worse when ill or physically stressedü Quote Link to comment Share on other sites More sharing options...
Guest maia Posted July 8, 2013 Report Share Posted July 8, 2013 Bingo! http://www.medscape.com/viewarticle/772641_3'In addition to those direct effects, renal sympathetic nerves also release norepinephrine into the body's circulation, likely modulating further systemic effects.[15–17] Sensory afferent nerves detect these signals, thereby resulting in a further increase in central sympathetic drive.[16]'Postganglionic norepinephrine-releasing renal sympathetic nerves'.[12,13] !!!!!NET defeciency? Why not overproducing renal sympathetic nerves because the kidney is floating around stretching it out and its hanging there going, omg, help(fight or flight - norepi!) ??? Quote Link to comment Share on other sites More sharing options...
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