SunsetParadise49 Posted November 19, 2005 Report Share Posted November 19, 2005 Hi! I recently read on an online journal of someone from school that she has passed out several times and has been diagnosed with CFS. I'm talking to her right now, and she said that she also has anemia...is that a POTS thing by any chance? She has had loss of memory, throwing up, fainting/dizziness, and muscle aches. Or could anemia just have symptoms that co-inside with POTS?Any help and advice would be great! Quote Link to comment Share on other sites More sharing options...
Guest Finrussak Posted November 19, 2005 Report Share Posted November 19, 2005 lots of things can cause the same or similar symptoms as POTS or other types of dysautonomia. Your friend should be encouraged to get a complete checkup with a doctor; and be willing herself to take some tests to get to the bottom of it. While many types of dizzy and fainting spells are harmless except for the landing part, many are not. Any screwy sx must always be examined by a doctor. She may want to start with a family Dr or internal medicine person. Then she might want to request a cardiac consult if there are no answers. Its a process of elimination. Doctors are trained to rule out simple stuff first...still going by the motto of " when you hear hoofbeats, think horses not zebras" and dysautonomias are ZEBRAS...so patience until answers are found!!!FYI anemia CAN cause stuff...but usually has to be pretty bad...and CFS can spark dysautonomia directly or thru autoimmune stuff,,,as well as directly cause sx by itself, as can the original infection that caused the CFS to begin with ( mono, Lyme etc) again a doctor must figure this out Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted November 19, 2005 Author Report Share Posted November 19, 2005 I found out later on that she a had a tilt table but passed it........she said that she loved having that test done and she was serious about it!!! I couldn't believe when she said how it was fun having that done. I know I for one hated that test and would rather never have it done again lol. Quote Link to comment Share on other sites More sharing options...
Guest Finrussak Posted November 19, 2005 Report Share Posted November 19, 2005 "Passing" ttt is NOT a good dx criteria...as many false negatives...I myself had a HUGE increase in heart rate and a drop in BP to 80 over NOTHING!!! and yet my test was called "negative"...because I never passed out--She shopuld ask for the actual results including the minute by minute notes on her vitals and then take it to a knowledgeable doctor~~~If the faints persist and she is a good friend dont let her ignore it.and BTW I hate the darn TTT myself!!! make me misreable and the techs always try to MAKE me pass out so they keep me up there, retching and woozy for TWICE the usual time!!! but my body ( for good or bad) always "fights" it...plus on any given day if your body functions OK then any test will be "normal" yet you may still have a disorder~~~~ Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted November 19, 2005 Report Share Posted November 19, 2005 yes, I went thru same thing on tilt. The stand in for my doc was clueless and since I didn't pass out the test was 'inconclusive'? But I was sick as all get out and my HR went thru the roof.She needs to find "enlightened doc' that knows how to interpret a test. My cardio later in the office saw it IMMEDIATELY. My endo doc saw it immediately.And Dr. Grubb said he could tell in ONE GLANCE I OBVIOUSLY had POTS. No normal person's HR LEAPS 55 BPM from supine to standing. But he said many docs have 'different theories'.So I hope your friend gets a better evaluation with better understanding.With all the testing many of us had, even if done PROPERLY interpretation of any test is everything!! Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted November 20, 2005 Author Report Share Posted November 20, 2005 The other thing I don't exactly understand is that she saw a cardiologist, and when I was naming some of the terms like NCS, POTS etc. she had never heard of them. So either they didn't know about Dysautonomia or they seriously do not believe she could have it. But the way she was talking really makes me wonder it sounded so much like me! Where we live, we have no pediatric cardiologist and the adult one I saw, was no help what so ever in helping me out. SO since we live within a few miles of each other I know that she surely has not seen a pediatric doctor. She mentioned that they sent her to a rhemo. doctor, infectious disease doctor, neurologist, then the cardiologist. She had a MRI, CAT scan, and the ttt. That's all the information I found out and she could still have anemia while having Dysautonomia. Also, would the time of day that she had the ttt done play a rule in how she passed the test? But yet, she claims that she's passed out several times! So who knows lol, but I will pass along the information that you guys have given me. Thanks!! Quote Link to comment Share on other sites More sharing options...
persephone Posted November 20, 2005 Report Share Posted November 20, 2005 Don't talk to me about TTTs-I thought I was going to DIE in the last one. They had to get someone to hold my hand because it went blue, and I was crying out "STOP. PLEASE STOP I can't take it, my body just CAN';T TAKE IT-" I was slurring my words and everything...I felt so ILL ,heck I think I probably WANTED to die to stop the terrible pain and weakness I felt...but they simply tilted me back to 50degrees...instead of letting me lie flat. no wonder my blood pressure disappeared and became asystolic I heard TTTs are based on medieval forms of torture--I must check that out! I wouldn't be atall surprised. If your friends was serious about enjoying the TTT I would get her to have her head read, not her heart:D Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted November 21, 2005 Author Report Share Posted November 21, 2005 Don't talk to me about TTTs-I thought I was going to DIE in the last one.I thought the same thing durring mine! I couldn't believe that she was serious! Quote Link to comment Share on other sites More sharing options...
steph37822 Posted November 21, 2005 Report Share Posted November 21, 2005 oops Quote Link to comment Share on other sites More sharing options...
SunsetParadise49 Posted November 21, 2005 Author Report Share Posted November 21, 2005 Hi Gwen, this may seem a bit paranoid on my end.....and I would imagine anemia can cause some of her symptoms. But it worries me when she says she loved the tilt table, and that you say she says she's passed out several times....she isn't making herself pass out on purpose is she?I saw a thing that disturbed the daylights out of me on Oprah last week about how many teenagers are playing "The Choking Game" where they make themselves pass out "for fun." And some bells went off when you said she actually enjoyed the tilt, because for the most of us, it's certainly a miserable test, even though it mimics what are bodies are doing basically everyday. For any parent of a teenager for this matter, this is a highly disturbing NATIONWIDE trend that is KILLING KIDS.Sorry if I'm way off Gwen--just sounded off to me!Take Care-StephYeah I've heard about that Steph, but I never thought about that... but when I read that she's been passing out a whole lot nd the CFS thing I really became concerned. I know that the most least suspected people do things to themselves that they should not be doing. I'm going to try talking to her again and find some more out somehow. Quote Link to comment Share on other sites More sharing options...
lthomas521 Posted November 21, 2005 Report Share Posted November 21, 2005 I heard TTTs are based on medieval forms of tortureActually an ancient method of torture: crucifixion! Quote Link to comment Share on other sites More sharing options...
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