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erikainorlando

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Everything posted by erikainorlando

  1. My EKG's are always abnormal after activity and normal after periods of rest. So..on one of my trips to the ER, they gave me nitro following my abnormal EKG. It helped me too. I felt better immediately with the chest pain and pressure. Are your EKG's abnormal on being upright or with activity? I don't take it obviously on a normal basis. I always have chest pain after being upright...but if I lay down my chest pain will go away... Anyway...I am not really so inclined to make heads or tails of much of the constriction information...(I get am embarrassed to admit I just get confused)...but this is my personal experience. Erika
  2. Great song!! Theme song for me in all these challenges ... I am sitting here sobbing. But we are gonna win! Erika
  3. Thanks for posting. Sometimes life hurts. My eyes are full of tears as I write this. I suppose I thought for a few minutes that my old boyfriend that had to go toi Utah to have fun and find himself might think of me on Thanksgiving and say hi or something. If leaving me to go to Utah was not enough...he is skiing and I am struggling to get my kids to the neighbors (thank god for her cooking for all of us this year). I am sorry to go on about this I don't know why this hurts so much tonite...but it does...I am glad I have a place to share it. Happy Thanksgiving. Erika
  4. Firewatcher - I saw the article you quoted...thank you!! Now...I can't really get it..if vasomotor rhinitis is caused by the swelling of the blood vessels in the nose..how does this relate to POTS...My cardiologist and you talk about the inadequate constriction of blood vessels in returning blood back to the heart..am I reaching here? Thanks, Erika
  5. I just want to add that I never had an allergy etc until I had that virus last fall. Then my nose started to run and I felt awful!! So for me there is definately a coorelation between getting POTS and this vasomotor rhinitis. When I am very POTS my nose runs more than other times. That is my story...furthermore....went to ENT and Allergist after Allergist and no one had a clue...no sinus meds ever helped and neither did any of the allergy meds...I just kind of deal with it. Compared to the other POTS stuff it is so insignificaant for me. Erika
  6. I am gonna ditto Julie's response. I can't tell you all how much I appreciate you all and your support. I am so blessed .. I am never alone in my illness anymore...what a gift. Thank you. Happy Thanksgiving. Erika
  7. My nose is stuffy and runs we thought it was allergy but it is not.... I thought this would all be part of my diagnosis last year...but it was a dead end!! Finally, after the POTS diagnosis my ENT told me my wild fluctuations in BP and HR can cause the tiny blood vessels in mthe nose to be irritated mimicing allergies. Someone else here probably has a better explaination..and I am paraphrasing!! Erika
  8. Thank you!! Yes...that seems to be the big one for me. I have such a rise in hr. Even if I can get my standing hr a little more under control with bb's, if I do stairs or even sing (not well I might add) my hr soars...I do exercise. I have more muscle tone now than I have in 15 years...but I get soooooooooo sick after exercise. I notice I even walk slower just because I think I know that any rapid movement causes such problems for me. I suppose it is that whole can't ge the bllod going where it needs to on movement I looked this up on the net..but had no real findings....so thank you!! Erika
  9. Can't function at all without my toprol xl!!! Love it!!
  10. I know hr is supposed to be between 60 - 90 (or 100). BUt my question is say going up stairs...my hr will climb from 100 to 130. Any movement is always going o make my hr increase a bunch (even on beta blockers). What is considered normal? Thanks, Erika
  11. No work for me. Even part-time is impossible at this point. I was a computer programmer...but even sitting upright and having to "function" at a job exhausted me and I could never make it more than 3 days in a row...then I would be in the hospital...it was a cycle for me. I had to surrender...at least for now. But I am hopeful. Erika
  12. OK...I haven't had a holter monitor for 10 months. Last monitor showed hr very high (190). My doc says to take my toprol tomorrow and he can see what is happening when I am on meds and feeling somewhat better (ps I don't really feel all that much better even when my hr is lowered on bb's). My hr is lowered so much on bb's so I am afraid that it won't show so many abnormalites! I am afraid if I take all my meds they will say "oh...it is not that bad". Before my TTT they didn't let me take my beta blockers for 2 days (I was dying). But then it really showed how awful it is. I know I sound paranoid...but in the beginning no one believed me....and I don't want my disability insurance to say ...oh she is ok. etc. But then again, I want to give the doc an accurate picture... Anyone on have any thoughts...maybe I am just nuts...but I struggle so evveryday and I want someone to have that on paper!! Erika
  13. You girls made me smile. I had my first baby at 30, second at 35. My sister had a healthy baby boy at 44 1/2!! So I know you are not fretting but you have plenty of time!! NOW I am hoping menopause will calm my symptoms. I have done some reading and it sounds like the hormones we women have seem to play some part in autoimmune disorders....there are many smarter than I on this site and I am sure they know why...but I am looking forward to menopause and hoping this may help some (I am 46). Erika
  14. Count me in...same problems with tricuspid and mitral valve....leaky I think they said. But I do think it is just POTS. I am sooo ill a lot. Alll the symptoms you mentioned I have too. I remember begging the doctor to help and you sound like me. I am learning to manage my symptoms a little better and getting more of a handle on my life...youn will too. Hang in there..Erika
  15. I know that for me there has definatley been an emotional componenet to this illness as well. I think I read somewherre that this is true as well. How could there not be...I mean given the hr and BP bing so relatedt o feelings of anxiety or for me it is more a feeling of agitation. I used to get so agitated and just not know why.....but I also really really tried to keep my mouth shut during those times!! I think it is realted to the excess neurotransmitters in our system. Extra epinephrine or norepinehrine...somthing like that. I really have been so much more even since starting Zoloft even tho I don't think I am normally depressed...I just really think POTS can throw off neurotransmitters that can affect us emotionally....along with all the havoc that being chronically ill can make us feel. I hae shortness of breath etc....on movement...I am so ill from going to the grocewry store at this point today!! So hang in there! Erika
  16. I sat I at home last nite and saw "House" for the first time. Several things really stood out to me and I just wanted to post. The man had terrible pain..and couldn't get a diagnosis. He was a family man with a wife and young child. For three years he endured chronic pain and no one could diagnosis him or moreover offer any help. He showed up at "House" because he couldn't take it anymore and decided to try to commit suicide. Some of the doctors thought he was crazy and depressed. Thought he was in pain to get attention; trying to commit suicide because he was selfish. House finally says "He is not in pain because he is depressed....he is depressed because he is in pain...all the time". The other doctors said "well...no one can find anything wrong with him so what does that tell you?". House says "it tells me they are idiots". Boy I could have used a Dr. House last year!!! So it goes on and they can't find the answer and the guy keeps begging to kill himself. At one point his young son says "please let him die...he is not himself anymore (he basically is just the sickness and wants to die)". Well, that one kind of got me being the mother of two kids living at home and try as I might I still get irritable frequently when I can't function and somenoe needs a ride or has a questin and I don't even feel like I can talk let alone drive... The whole thing got me as a matter of fact. I remember last February, before I was diagnosed (altho they put me on toprol as my hr was soo high)...but I could barely function...trying to work...crawling in the door...yelling at my kids...my skin hurt...no one knew what was wrong and many didn't believe anything was wrong!! One nite, I felt soooo sick and thought I didn't want to live anymore if I had to live like this. I looked over and saw my son sleeping next to me and thought I had to hold on. I have been holding on ever since...just wondered if any of you related as well. And..in the episode they did find the answer...go figure!! Erika
  17. You are soo smart. How did you find this out? I just looked up the anatomy of the heart and what you said makes so much sense!!! Why can't a doctor tell me this stuff!!
  18. Honestly I don't have flaress...everyday is the same for me. Somedays are better than others but pretty much I am only able to be upright and moving o many hours then I have to recline...I always pay dearly for activity. Pretty much feel like I have run a marathon most every minute of any day. Not sure if that qualifies as fatigue...but anyway...so that is my experience for what it is worth Erika
  19. OK guys....I have pain in my chest...but really in my breast bone...right in between my solarplexis and the start of my throat...related to activity. Terrible pain ...waht is this?? Again as always if I lay down and rest, it will leasve and not come bacck until I am uright and going again. Thanks all... Erika
  20. I'd say when I have been upright too long I feel druggged somewhat. But I begin to feel soooooooooo soooooooo sooooo sick after any activity or just being upright (even sitting with legs down). I feel like I will die...it is this real sick feeling that is my worst symptom. Erika
  21. I would be remise if I didn't mention that beta blockers have given me a new lease on life!! I just really can't get around at all without them. I still have many symptoms but I really couldn't function before beta blockers. Erika
  22. It can be such a struggle and people can say such stupid, stupid, stupid (and i could go on here) things. Some times it is just too much...so we vent. I love the ones that say (as I am 46)..."Oh,yea we are just getitng older"..etc. I think..hm...yes I am getting older but I have POTS and previous nerve damamge!!! And I am raising kids on my own and my boyfriend left me to ski and have fun and woooooooooowww.. But at the end of the day...sometimes I just choose not to talk too much to those folks who say repeatedly stupid things. And sometimes I really try to be grateful that I am more functional than many even on this site. I have noticed my patience fore this kind of thing is closely related to how ill I am feeling.. Erika
  23. Jana - Do you think Vandwerbilt is as good at identifying underlying conditions? My doc recommends Mayo but my ins will pay for Vanderbilt...and everyone is strapped financially right now .. Thanks..Erika
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