Guest Belinda Posted February 26, 2006 Report Share Posted February 26, 2006 Well as many of you know I am having a hard time with my symptoms of breathing..or whatever you want t o call it. Well finally after about two days of it worsening again I finally went first I had to decide which ER to go to since my neuro and,GP,pulmonologist and E.P. are all from different hospitals..see I live by Cleveland so it is better to see neuro in CLeveland.I even called on Fri. the neuro do you know what he told me "Isee alot of POTS patients and the s.o.b. or what your describing I have never heard of with POTS patients.." what do you think of that????So after MUCH disconfort I went even though he told me there was nothing the ER could do ..I mean I have tried to alieviate it doing everything possible.Needless to say they put me in a critical room did 3 EKG's doc. came in said I think it is your esophagus and I told him whatever it is DO somethin I drove 45 min. to get here and have gone through this before.They then transferred me to a smaller room and I laid ther in discomfort for like 5 hrs. the doc. felt so bad because he called my neuro. and on call said "Don't know". And GI wouldn't be able to do test to determine how much spasms are really going on..I mean it was like an elephant squeezing and my nose and throoat felt like they weren't getting air and spasming.So he did give me nitro paste which does relieve a little but gave me major migraine of course..which I said it would.So here I am today with same problem and no relief..I know everyone goes thorough this I just wish it wasn't so cruddy feeling..Sorry for the long post..thanks for letting me vent as I have freaked out before and not gone anywhere for this and now that i do there is no answer.ROAR..Poop on it all..oh yes something I did notice is that I started my period maybe that has something to do with it ..you know hormones and the fluctuations in blood vessels and such. I don't know I am not a doc.Ok..I will let you all rest your eyeballs..Hugs,Belinda Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 26, 2006 Report Share Posted February 26, 2006 Well Belinda how are you doin'?It may sound terrible but I don't think this will be the last of these unfortunate visits!!! Yeah, it is all too familiar. This is one of those ER horror stories you will add to your portfolio! I hope you can get to the bottom of the tight breathing problem with your pcp on Monday! Is it getting worse? Is it passing on its own? You have had these before you say so what made you go to the ER? Do you think they are getting progressively worse? Be ready to discuss this with your pcp and maybe you will find a way to ride it out if it is going to be a recurring thing OR get some new tests to rule out a new problem developing.And yes, getting your period , from my experience, makes symptoms much worse!!!take care, tearose Quote Link to comment Share on other sites More sharing options...
Be Still Posted February 26, 2006 Report Share Posted February 26, 2006 Belinda, I'm sorry you're having so much trouble. That sounds frustrating and frightening. Makes you feel sort of helpless and furious when you're really struggling and no one has a clue. I Googled a little bit about this when BriBri mentioned her trouble with it, and I kept running into articles about hyperventilation and CO2, and some people being more sensitive to low levels of CO2 and that kicking in sympathetic overactivity. Can anybody clue me in on this?I found this informative and fascinating:"Carbon dioxide regulates the activity of the autonomic nervous system. If carbon dioxide is low, it stimulates the sympathetic nervous system putting the body on red alert. This causes erratic, breathing. Carbon dioxide regulates smooth muscle or the involuntary muscle of the airways, blood vessels etc. Low levels of carbon dioxide cause smooth muscle to constrict and spasm. (Maybe this is what's happening, Belinda.)Carbon dioxide maintains the acid/alkaline balance (pH) of the blood. Low levels of carbon dioxide cause 'respiratory alkalosis' and the body produces lactic acid to counteract this."http://www.buteyko.co.nz/buteyko/work/default.cfmThere was mention in another article about a Hyperventilation Syndrome, and even without acute sx, there was low level hyperventilation going on. This article mentioned the problem was worsened by:?Hormonal triggers. CO2 levels drop by up to 25% post ovulation, during pregnancy, and menopause.?http://www.medic8.com/healthguide/articles/hyperventsyn.htmlNote, these are not medical papers. If anyone can contribute more, I?m sure we would all benefit.Belinda, I hope something eases up, soon. Quote Link to comment Share on other sites More sharing options...
Guest Belinda Posted February 26, 2006 Report Share Posted February 26, 2006 When I went my O2 levels were fine of course but even today it feels like even my throat along with the esophagus nose and alike is tightening and spasming. And trust me it is not anxiety because I am very calm even the ER doc. said that it isn't mental state causing this.I have moist heat packs on ansd am sucking on cough drops..constant. Although nothing seems to relieve I did call my mom In Fla. she said she wonders if Lopermide might help since it is anti-spasmotic..maybe it would help. So if My Co2 levels are low how can I fix it I wonder. I do not hyperventilate and breathe in though nose out through mouth as a rule.And yes whatever the trigger may be... my period coming today has something to do with it.And if I make it through today with insanity..I will be calling immediatley to PCP and I don't care if I have to rip her out of the office something needs to be discovered.It is at the point where I don't feel like I can swallow my spit. So i guess If I go back to ER I will tell them to do Co2 checks on me intensely and immediatley.I wonder if trying the paperbag breathing would help.This has never ever been this bad..I had similar feeling last mopth of course I was also pregnant then and then had D+C..so my hormones have been pretty messed up..in fact I have to go back and have blood draw repeated that recheck levels..too high still last week.I am ready/already to go back but know there will be nothing they can do.So I guess suffer and be very patient for now..Thanks guys..Belinda Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted February 26, 2006 Report Share Posted February 26, 2006 Belinda,I'm so sorry to hear about this I've had problems with shortness of breath, but it's associated with hypotension. What you describe is different, and sounds awful! I truly hope you can get some relief, and soon. ((((HUGS)))))Lauren Quote Link to comment Share on other sites More sharing options...
dianaD Posted February 26, 2006 Report Share Posted February 26, 2006 Hi Belinda,I have very similar problems as you. S.O.B. has been my primary symptom for over a year, confounding many a doc. One "POTS specialist" even misssed my diagnosis of adrenergic POTS completely because the S.O.B. befuddled him (he didn't put me on a TTT!).I would suggest asking for some pulmonary tests including MIP and MEP (ability to inhale and exhale). Mine are reduced by over 50% and they think it is from damaged innervation to the breathing muscles. I am on minocycline which helps repair damaged nerves and it seems to be helping. When it gets really bad, a clonazepam seems to help, also. I think that S.O.B. is almost ignored as it involves POTS. Dr. Fealey in Mayo said that he does see it, but they just don't understand why it happens. It feels like something is tightening up, but who knows.Hang in, Quote Link to comment Share on other sites More sharing options...
Guest Belinda Posted February 27, 2006 Report Share Posted February 27, 2006 I will be calling and asking lots of questions tommorow..thanks for your support everybody. Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted February 27, 2006 Report Share Posted February 27, 2006 I'm sorry Belinda-------it's just not right that you had to deal with such ignorance. It is truly unfortunate that in the last five years since I have been diagnosed with POTS, I have not seen this continuous problem with ignorance in the medical community get much better.It's really a shame that we as patients have to take it upon ourselves to find out what may be wrong by doing our own research----as it seems we know more then the medical professionals about ANS dysfunction.At least it seems that way.As dianaD said----pulmonary testing may be needed to determine the source of your breathing problem.I hope you find out what's wrong, and you feel better soon. Julie :0) Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted February 27, 2006 Report Share Posted February 27, 2006 Hi Belinda, I too have the SOB problems...Do you think that a vaporisor or humidifier would help? I get the 2 confused, but I'm sure you know which I'm talking about!Jacquie Quote Link to comment Share on other sites More sharing options...
Guest Belinda Posted February 27, 2006 Report Share Posted February 27, 2006 Jacquie- What I feel in my nose in like it is throbbing and filled with blood even though it isn't..and my throat spasms along with this..feels like I am short of breath.I run humidifier, wouldn't hurt I am sure..especially with the heater running so much.I have tried moist heat on chest and neck and cough drops to soothe burning feeling..also have saline spray for nose..I am out of options.My doc. wants to send me to pulmonary at University...in CLeveland.Belinda Quote Link to comment Share on other sites More sharing options...
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