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Wufflebear

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Everything posted by Wufflebear

  1. I get the buzzing feeling too and itchyness (that was worked up as allergies but no cause found.) It is annoying.
  2. I am whining and venting I know..... I pretty much have to work full time as I have large student loans and my husband won't help with them. He also won't work (nothing really but min wage jobs here and he has a heart problem and vertigo and he frankly thinks it is my turn to support him as he is 10 years older and "already put in his dues"). He stays home to take care of our daughter. So I am the sole provider. But working full time is so hard!!!! Some days it is just survival.. I wish there was help for me... A way to earn what I do now or more and work less. I just feel so yucky today. I am tired, everything hurts for no reason, I am dizzy, I met a door frame the hard way earlier and nauseous and this morning I kept getting the tunnel vision etc starting... I was late for work and my husband was ticked off cause I was running late again...(I have felt yucky for a few weeks now). I would go home but going home to a husband who thinks I should be able to work and a little kid is no rest. If i could get away with sucking my thumb at 33 I think I would...
  3. I second ginger ale and soda crackers, and root beer and soda crackers. I get nausea A LOT. Sometimes going outside where it is cold kind of shocks my body into behaving itself too. (at least for a while)
  4. This is a hard one, and I have to echo the earlier posts. I have had NCS since I was 5 years old. I developed POTS later in life. I have one daughter who is now almost 5 years old. Pregnancy changed things for me. I used to get several minutes of warning before I would pass out and now I am down to say 20 seconds. I used to be able to make the symptoms lesson by sitting and go away with laying down (although to really go away I needed a good nap). Now sitting does nothing and laying down only marginally helps. Between my daughters birth and age one, my husband worked nights and I worked days and I was miserable and desperate. Yes it can be done but it was very hard and I desperately needed help that was not there, I found that It would strike in the middle of the night (you know when you have to get up suddenly for a crying baby etc...) I would be carrying the baby and we would both go into the wall. I learned to walk sideways with an arm always out in front and go much slower. As she got older we developed a very strict schedule as my body had to have that. Now that she is almost five she is better about letting me lay down. I also do crafts on the bed, board games, stories anything that maximizes my horizontalness on bad days. we still have "quiet time" where everyone has to go to their room and stay there between 12.30p and 1.30p or 2p.. She gets overstimulated so easy that this works out great for her too. Anyway, this is just what happened to me and everyone is different. Follow your heart and do what your gut tells you is best. It is definately worth it, and I would do it again in a heart beat.....but it is hard.
  5. Thank you guys again...and thank you dizzygirl for reading my page. It is so wonderful to have found this site and soooooo wonderful not to feel isolated with this. momdi- My symptoms are kind of like that now...milder. Except some days.....(-; Let us know how the visit goes! I really think I should find a good doc and get looked at again properly but I am so far out in the sticks!
  6. Thank you for the information. THis was found in me like 15 years ago and you know, or can imagine, how it is when you go undiagnosed for years and years...You grab at stuff. Now that I have a dx, I still sometimes wonder about stuff they did manage to find when I was a kid...but could not explain. The IgE level was one of those things...
  7. Lovethatkid- I hope they can do something for him too!!!!!
  8. WHen I was seventeen and at National Jewish in Dever a Dr. Jones found I had an IgE level of 0.0, he had only seen one other patient with this. He did not know what it meant. I am still curious. Anyone know what this means??? Is it anything???
  9. Do you remember what the name of the test is or what genetic mutations they are looking for? I live in the sticks and If they dont know which test to do, I may need to tell them. I left a vm for the doc.... E Gads! I am so nervous!!!!! Wouldn't it be ahoot to finally find a REAL cause?!
  10. Thank you all for responding. It was horrible as a kid and to be thru all that medical stuff to basically no avail. Man what a emotional knot it is to unravel. (-; I am glad I am not alone! No one in my family has anything like it either... Is there a test they can do to tell you it is genetic??
  11. I have had this since I was five. That was when I had my first "attack". I was in a library at the time. I have always studied in bed too. I hate desks!!!! (-: I also hunch over a lot. I bought a brace to help my self not end up with a hump but I can only stand to wear it when I am sitting reclined...
  12. I have had this since I was five at least. How many of you out there are like me?? My medical and story are at http://whackercat.tripod.com/id7.html . I would be interested to know how many people are like me. Is it genetic?? From what I have read it seems like it can be. But I am still learning about it. I was undiagnosed until 2002 (at 31 years old).
  13. thank you everyone for the posts. I think I am just now coming to terms with how horrible it was to have had this from 5 years old and having been treated like I was by docs. Sure there were some nice ones who really did try to help but I guess the science and know how was not there yet...Then there were others who were just trying to buy more toys for their yachts. (-; I finally put my story, in my words on my web site. For too long I have been silent about it or let family members talk for me. My story, in my words
  14. cool. Ok I think I have it straight now. Yea, when I wake up I often have that 'it is gunna happen today' feeling and sometimes when that feeling is strong, when I stand up my pulse goes from 60 bpm to 120, one time I managed to clock it at 150 and then it must go back down cause when I can manage to check it again it is back down at 70 or so! I have been lucky in that I always know it is coming, and that I have always managed to go to the floor in a somewhat conscious fashion....then I must go out cause I can loose 10 minutes..It is like having my own personal time warp. I dont know what happens when I am out but if I am in a public space people move away (like in bus stops or buses etc.) I am so glad I found this place! For years (since I have had this since I was five at least....it has been 30 years...) I thought everyone did this and I just failed to cope somehow, so I just have muddled along the best I could... I wish it was like having a broken arm, ya know? then it would be obvious... I am just now trying to sort thru and straighten out all my years of feeling like a failure in the coping with being alive department...
  15. I think I am still confused. So POTS is tachicardia upon standing or after prolonged standing and NCS is everything else. Can someone clear up my confusion??
  16. So I was told I have vasovagal syncope a year ago, I have had it all my life (first fainting episode was when I was five, but it was never diagnosed...dispite going to every 'ologist in the book and numerous hospitalizations as a kid) but my heart races (increases from 60 to 110 or 120) when I start to feel those horrible pre-syncope feelings upon standing or after standing a while, or in a hot shower, or after taking cold medicine etc..... I am confused as to the differences betwen NCS and POTS, in NCS does the heart slow vs speed up with POTS? Or am I confused?? I get the whole presyncope leadup (grey out, loose vision, nausia, heavy tummy and legs, heart racing, hearing loss etc). I have gone down a few times in my life but thanks to the advanced warning it does not happen much. Normally I just have to lay down, sometimes everytime I stand in the morning it will happen. Most the time now (ever since my daughter was born) I just have days where i have that "it is gunna happen today' feeling when I wake up but I can manage to stop it from overpowering me by taking it slow, sitting or laying down periodically, drinking lots of water, fidgeting etc. So most days I have symptoms like that, but lately I had bronchitis and it has gotten worse. That is normal for me, especially if I have to take any cold medicines. I think having had it for so long I just have gotten use to the day in day out adjustments I have to make, and besides docs for years could not find anything really wrong..They called it Chronic fatigue, migranes (from the post attack headaches), hypoclycemia etc...Anyway, I am confused. I do work but it makes it so darn hard to work full time, and I am often late to work cause I just cant get moving as fast as others and I have to compensate my body thru the day. I have a call center/trouble shooting job and sometimes I am just worthless at it. I wish I could get it all nailed down. thoughts??
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