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About CaitlinRose

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  • Birthday 02/04/1984

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    Before I got sick I loved to sing in the worship band in my church, teach vacation bible school, and volunteer at a wildlife rescue center. I was a dancer for 13 years and I loved theater and acting. Now I have gotten into piano, and I like to play with my dog Frisbee, take my telescope out, read, and go to church.
  1. You should probably talk to yur sons doctor, maybe theres a better med for him that won't cause weight loss. While 7 pounds is a good amount of weight, I don't think you have to worry too much...it doesn't sound like its at the critical point. I started tube feeds when I was 16 and my parents didn't make the decision to start them until I was dow to 91 lbs. It is rare to need tube feeds and often when they are used they are only short term. Your son might do better with frequent smaller meals. Thats what worked best for me when I first got sick. Try not to worry too much...I will be praying for you and your son. Feel free to email me if you have any questions or ever want to talk. God bless, Caitlin
  2. I'm not really fimilliar with your other issues so I unfortunately don't really know how to help. If you have a concern don't hesitate to bring it up with your doctors and maybe they would have some advice for you. I have gone into surgery with a bp of 60/40 and I was ok and only had a few minor complications due to it. I don't really have any advice for you...I just wanted to let you know that you'll be in my prayers. I hope everything goes well. God bless, Caitlin
  3. I wanted to let you know that I am truly sorry for your loss. My doctor said drinking extra fluids can help lower heart rate but I haven't been able to take in enough to see if it works. I am on atenolol and it works wonders for me. My heart rate was 250 at rest and it brought it down to 70. I don't have any other suggestions but I wanted to let you know I will be praying for you. I hope things get better soon. God bless, Caitlin
  4. Hi! I was just wondering if anyone else has delayed gastric or intestinal emptying. The same virus that gave me dysautonomia also gave me gastroparesis. It has progressed to no gastric motility and poor intestinal motility. I started off on NG tube feeds when I first got sick and now have a G/J tube. I get jejunal feeds and have a vent in my stomach. I was just wondering if anyone else has ever had experience with tube feedings because of their dysautonomia. Thanks for the input! God bless, Caitlin
  5. I've had hair loss since I got sick 4 years ago. When I was little I had a huge thick head of hair and now it is very thin. (Its a general overall thinning). My doctor sent me to a dermatologist for it who said it was possibly due to the beta blockers but it is most likely nutritional (I'm on tube feeds and have a hard time with intake). Hope this helps. God bless, Caitlin
  6. I have terrible bone pain too. It feels like white hot pain deep within the bone. I haven't found any meds that help it, it gets so bad I can't even move or breathe. Does anoyone know what causes the bone pain? Is there any info you could direct me to or do you know of a doctor who is fimilliar with this aspect of dysautonomia?My dysautonomia doctor had never heard of this symptom and didn't believe me and went the psychological route. Any information anyone has would be great. Thanks! God bless, Caitlin
  7. 1. Caitlin 2. 20 3. post viral dysautonomia, small and large nerve fiber neuropathy, gastroparesis 4. 16 5. Connecticut 6. bedridden, tachycardia(180-250 bpm), bradycardia (30-40 bpm), low blood pressure (50/30), fainting, vomiting, dizziness, bone pain, migraines, neuropathy pain, brain fog, blood pooling, fatigue, chest pain, mottling 7. same as above but not as severe, or not all at the same time 8. SSRI's, calcium channel blockers ( caused tachycardia and fainting), physical therapy (made dysatuonomia worse) 9. atenolol, midodrine, reglan, zofran, miralax, prevacid, ultracet, midrin, (sorry can't think of all my meds - brain fog!)
  8. Hi Stacey, I'll be praying for healing for your dad and God's peace for both of you. I hope he is feeling better soon! God bless, Caitlin
  9. Hi everyone, I'm new here so I just wanted to introduce myself. My name is Caitlin, I'm 20 and I have a type of progressive post viral dysautonomia. I have had dysautonomia and gastroparesis(digestive tract immotility) since a virus I had when I was 16. When I'm feeling good I like to go to church play piano, read, stargaze, sit outside, play with my dogs. Its so nice to find resources like this for dysautonomia...I'm looking forward to getting to know you all! I hope everyone's having good day! God bless, Caitlin
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