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About Chrissy

  • Rank
    Advanced Member
  • Birthday 07/13/1987

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  • Gender
  • Location
    Lafayette, LA
  • Interests
    acting, screenwriting, interior design, listening to music, basically anything that involves creativity/imagination. I also enjoy building a home based business with my parents.

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2,254 profile views
  1. I just had to share...After checking the mail today, I had a mild heart attack. There was a letter from the Social Security Department. Now keep in mind the last letter I received from them sent me into an emotional breakdown and my family put me under a suicide watch at home. So the first words out of my dad's mouth today were, "Okay, everyone sit down!". I began reading the letter first as my mom said from the other room, "Well it must not be good news, she's not jumping up and down screaming!" But in reality two bold words at the top of the page caught my eye...FULLY FAVORABLE! I couldn't e
  2. Yeah, I keep telling my mom. It doesn't help the water I drink goes right through me. I'm not even sure it's stopping to be absorbed. Lol. Yeah, I'm still really bad off days later. Migraines like never before which is saying something because the migraines were my first serious symptom 10 years ago. Slurring words, off balance, dizzy, short of breath, and rapid breathing. I've been dealing with POTS for 10 years and I don't remember ever feeling like this. My cardio and Dr. Grubb both say I'm a ticking time bomb just waiting for the next major symptom to be triggered. I sure hope this isn't i
  3. Hi guys. So I've been doing really good with the physical therapy 3 days a week they have me doing to recondition and help my joint hypermobility. Then Friday something went wrong, all of a sudden they are freaking out because my oxygen is only 93 and they can't get it to come back up. Needless to say they had me laying down until they could raise it a little, then they sent me home. Well my mom said my lips still looked blue and had me go home and do a nebulizer to see if it was my Asthma acting up. I did and then slept the rest of the day. I was dying a thirst and chugging water as much as p
  4. Hi Group! It has been quite awhile since I have been here! Things have really gotten much worse for me in the POTS / Dysautonomia world! My sensory overload issues have gotten so bad that I have become practically home bound! It is very crippling! Especially a sudden unexpected noise of any kind will immediately set me off into what looks like a severe autistic episode! It takes quite awhile for it to pass and then days to get back to what would be considered normal for me. I have also lost us of my legs on more than one occasion. Out of nowhere, I suddenly cannot stand up. It is very scary! I
  5. As the weather dropped to a wind chill of 11 my "asthma" started acting up. My chest got tight and I struggled to get a decent breath for days. I tried the nebulizer, rest, fluids, and nothing helped. Any suggestions? I also get a sharp pain in my lower lungs and icy freeze with every attempt to inhale during the episodes. The ER is useless and I am now back to having to meet a high deductible so any suggestions is greatly appreciated. Thanks. Chrissy
  6. I first developed seizures after my pituitary surgery in 2009. It started after months of insomnia and was a slow progression. It started with a facial tic, then turned into a full body rocking and uncontrolled moving of one or both arms. Then I began losing concenseness with or without movements, I'd have gagging, choking, and uncontrolled tearing up. Now the episodes present more like an autism spell. My eyes roll back into my head, I ring my hands together, play with a button on my shirt, can't make eye contact, mumble or speak repetatively in a childish fashion, spinning in circles or wand
  7. Hi everyone. After 8 1/2 years of progression with Dysautonomia and POTS my case has been classified complicated by every doctor I've seen since 2009. This has led to doctor's dropping the ball in my treatment, referrals to new doctors for new symptoms being turned down and/or ignored, and my medical team becoming concerned about further testing, unnecessary new doctors, new meds, and pretty much making any further moves toward recovery. My symptoms tend to escalate or new symptoms arise the more doctors try to fix the current symptoms. So it was decided that I should go to a research hospital
  8. Thanks for the replies. I have had numerous MRI's over the years, they all come back normal. And when I get out of the pool its not a pass out kinda situation, just a wobbley leg thing. But since the first colapse I take it real slow. First of all I'm usually only walking around in the pool anyways and always exit on the stairs so its just like walking out of the pool. But I end up sitting on the side of the pool, legs completely out of the water, for awhile before attempting to stand up. When I do stand up I have my mom or dad brace me to help me to a chair. Now we take the wheelchair to the
  9. I developed a new symptom while on vacation last month. After getting out of the swimming pool at three separate hotels on numerous occassions I would just colapse. My legs would just give out under me. I am fine while I am in the water, but upon getting out its like instant gravity, my legs become numb and then they just wont hold me. And it doesn't matter if I'm in the water 5 minutes or an hour, swimming or just standing nearby in case my nieces need help swimming, I have the same result upon getting out. I have been in many pools in the 8 years since getting sick and never had this result
  10. Hi, thanks for the replies. Katybug - I have had migraines since this all started in Dec. 2004 and have been unsuccessfully treated with more migraine prescriptions than I can remember. Nose sprays, oral drugs, iv meds at the ER, etc. I do find an ice pack at the base of my skull control the migraines and "seizure" activity temporarily. Otherwise I just wait it out. I've been to many Neuros over the years, but am currently blacklisted in the local area. They just don't know how to handle the complex case so they try to refer me out or politely tell me that come back would be a waste of my time
  11. Hi. I was diagnosed with GERD in January 2006 in addition to gastroparesis. I've been on everything from prescription prilosec, ranitidine, both, and now a new one. The gastroparesis supposedly went away in 2009, but the acid reflux remains. I still never regained my appetite and constantly have to remind myself to eat, get nauseated often after eating, and sometimes just from the smell or thought of food. But the scopes came back normal and I just deal til it passed. But two months ago I began feeling the way I did before I got diagnosed with gastroparesis. Going all day not eating, cringing
  12. When I first got diagnosed with Dysautonomia I was told I had an unusually rapid progression (from no symptoms to 2 pages of symptoms in 3 months). I recently went from an occasional tic to full blown seizures/muscle twitches in less than a year. I'll find out the specifics of what's causing the seizures and if the muscle twitches are related or yet something else. And now I went from double severely sprained ankles to hypermobile joints (knees, wrists, shoulders, back, spine, and elbows) in a month and the pain, cracking, and popping keeps spreading. They are calling it connective tissue diso
  13. Yeah my wrist hurts when I hold a phone to my ear, hold a cup, open a bottle, stirring stuff, folding, lifting, and pretty much any use. Some days it just hurts all day, sometimes I can't open my hand out of a half fist (that has become the automatic position lately) without major pain in my fingers. And writing, especially signatures is nearly impossible. Plus I find that my signiture is getting more of a long, loopy line than anything readable and even before the "injury" I could sign 4 pages back to back at a doctors office and none of the signatures matched. Weird! It's good to know its no
  14. So I went to a sports doctor about my sprained ankles and he did an ultrasound and found that my right ankle is "trashed",one fiber left in the ligament on the outside of the ankle. The left has all its fibers, but is so stretched out its not much use. He said I could walk on it as long as I wore ankle braces and said my treatment options were surgery, plasma injections into my ligaments, or agressive physical therapy. Getting a second opinion, either way the only treatment he performs is the plasma injections that the insurance doesn't pay for. So that was 3 weeks ago, then came the pain in m
  15. I started with more of a tic (head jerking and a sniff sniff) in September 2010 and it rapidly progressed since. My worst episode lasted 45 minutes with 2 minute breaks throughout. Managed to get some video during that episode. I'm fully alert through the whole event and can talk, but very slowly. I find they happen when I'm in crowded noisy environments, during insomnia periods, or anywhere with a lot of stimulation. I get major head tingling, but not full convulsions, during physical exams at doctor offices. I told one doctor how every night when I first lay down to sleep my eyes move very r
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