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Everything posted by surfgirl14

  1. Hey guys. So I went to my cardiologist last week and he really is pushing me to see Dr.Chemimisky at Childrens Hospital of Winsconsin. Has anyone been to her for GI issues? He says he really wants me to go to her because she is a gastrointerologist who speciaizes in GI issues with autonomic dysfunction. It is a very far drive for us so we would have to fly. If anyone has been to her... what was your experience like? Do you have to stay overnight for testing? Also he said something about getting shots in my stomach (botox) i think through a endoscopy for my gastroperisis.....has anyone done this? Thanks.
  2. Hey. sorry to hear that. I actually don't have pain with like acessing it and such (I have elma cream) ... but mines mostly when I am jus sitting around the house it will just start randomly hurting. The port works perfect no problems infusing, good blood return, etc. It just hurts mostly thats all. So far no problems.
  3. Monstrosity- Hey I have not ordered one yet, but I plan to. Hope you found what you were looking for!
  4. Hey Everyone! I am holding a awareness event in my hometown Charlotte, NC. NOt sure if anyone on this fourm is close by but I just thougth I give it a try and let everyone know about the event im holding. So it is a fundraising/awareness event that is going to be held at our local roller skaing rink (oviously most of us won't be able to skate that long lol but my friends and such who are coming to support will haha) but anyways it is going to be June 26th from 5:00pm-8:30pm. If anyone lives near or would like to come, let me know. Thanks.
  5. Hey I am actually apart of dynakids and yes they are still on there. They have a new site and if you go to dynainc.org on the very left hand side (not the tabs at the top, its below that on the actual page) there will be a thing that says Links and is underlined. Under that is a thing that says DYNA products, click on that. Then it will bring you to a page of all the awareness products they sell but since you are specifying you want a bracelet scroll all the way down and it says Dysautonomia Awareness Bracelets Only , and that's where you order them. You just fill out the order form.
  6. I now get IV fluids weekly but when I was like you and to nauteous to drink I would call my doctor who was in charge of my POTS and he would always call the ER ahead and call me in some fluids. It really depends on if you have a good enough doc that is willing to do that for you. Hope you feel better soon!
  7. kaT- yea exactly how your describing the swallowing things is how I feel too! It's so hard for ppl to understand though tht aren't going thorugh it (like family, doctors, etc) which can be quite frustrating. And yes I go from flushing to tachycardia to dizziness in that exact order most always. Funny how much we relate with that.
  8. yes totally can relate. Welcome to DYNA by the way, its amazing here ! ..... I have lots of tummy issues expecially I get bad flares with my GI stuff when I have difficulty swallowing, and when I get what I call stomach attacks. When I get my stoamch attacks my stomach basically is hurting so bad that I start flushing,my BP drops then I get all tachycardia and it just makes me all potsy from there lol so yea I can totally relate. GI issues def triger my other symptoms to come on. If you need anything feel free to message me. Hugs
  9. Hey Guys. So since I got my chest port in on March 2nd I have been having pain on and off that just goes away and is quite mild. But tonight it seems more server like on a 1-10 scale and 10 being the worst I would have to say a 8. It is a burning, achy, and uncomfortable feeling that spreads to my shoulder. I know there is nothing really wrong becaue I just went to my pediatrican today and she looked at it plus I go to a infusion center every week and its flushes fine and everything no problems. Also have no fever, or redness. I just want the pain to go away I don't know how I am going to go to sleep feeling like this. I don't want to get it taking out either its amzing for infusions and saves my veins. Has anyone else experience pain like this with their port? Not sure if it matters but I have a Bard Power Port. Any comments or feedback would be helpful. Thanks.
  10. Wow! Sorry to hear that everyone has had to go through that. Hopefully I will not have to have another hospitilzation. I have only been admitted once and that was for swallowing difficulty. Was just verry curious to know what the majority of us get admitted for.
  11. oh wow if doctors like to see your level to be 50 then mine was def low wow! crazy I think mine was like 12. Dang... .had anyone heard of vitamin d2? My doc has me on vitamin d2 perscription supplement.... is there a such thing as vitamin d shots? are those beneficial? Thanks.
  12. Ok. Awesome! That makes me feel much, much better! Thanks everyone!
  13. Hey all, thanks for the replies. I thought it was common in POTS. So I am guessing it is really not that dangerous. My doc sent a perscription into the pharmacy for me to pick up so ima start those tomm. Hopefully it will get better. Thanks.
  14. Hey. Guys so my ned peds GI doc I went and saw just gave my mom a phone call today and told her that I have Vitamin D deficiency. Does anyone else have this? Is it dangerous? Kinda sad about it , I just don't want more health problems :/.
  15. Just interested to know what different reaons people have been admitted for with dysautonomia. Feel free to share comments
  16. wow really? that doesn't sounds fun. When I was in the hospital they never checked me during the night really they just came in and made sure I was ok. They only took BP's in the morning and during the day I guess that was because I was on 24hour cardiac monitor with oxygen pulse ox .... so maybe thats why they didn't check my BP but that would be interesting to know. Yea it is no fun.. hopefully this will go away soon!
  17. Hey Linda. Thanks for the reply. sorry to hear you having to go through this things too. Interesting you have Addisons Disease they really thought I had that untill they ruled it out with blood work and urine testing. So but anyways yes I try to intake as much salt as I can and I'm sure I am getting plenty because I get intravenous saline 2 liters weekly at the hospital. So I would think this would help. When I am standing it is not as near as bad as when I am laying down. The only thing that worried me is the 72/48 which makes me feel so dizzy. But like u said before you have been told by many nurses BP drops at night. So not to worried just wish I wouldn't experience with unpleasant symptoms that go with it. I noticed yesterday (after a week of low BP's at night) that I have been having terrible miagraines. They aren't relieved with any pain meds not even 520mg of naproxen. Which is weird cuz they are usually relieved by that. I think it is the lack of blood flow that I am getting to my brain due to the low BP. But hopefully this low BP thing will just fade away. Thanks again for the reply
  18. Hey guys thanks so much for the fedback. Naomi- Yes the meds to raise my BP but not when laying down. When I lay down my BP drops dramatically. Rather weird.
  19. Hey guys. So I thought id ask if anyone has experienced this. So for the past couple of days my BP has been incredibly low when laying down. Last night when laying flat on my back my BP was about 84/57 and then when I layed on my side a uncredible overwhelming feeling of dizziness came over me so I took my BP laying on my side it was about 74/54. This wouldnt bother me if I wasn't having symptoms but I am so it is now starting to concern me. I feel really weak, tired and dizzy when this happens. When I wake up in the morning it feels like my entire body has no energy, and I feel like when I finally fall asleep with the low BP that it drops even more when asleep. I called the pharmacist the other night to ask him about the BP drop and he told me to go to the ER. Like most of us feel the ER is like a waste of time. The last time I went I was admitted for about 5 days and just given IV fluids, put on a cardiac monitor, and my vitals were monitored basically nothing else they could do for me. Should I be concerned? I just feel like doctors don't care with Pots symptoms because they claim its not life-threatning or really at all conerning. Hope everyone is doing well. Thanks.
  20. I was wondering about these. If your levels are find, do you still get the shots? Just wondering. My energy is really low and my fatigue and I wanted to try them. But my levles are normal.
  21. hey. oh ok ill go read that. Hope you get out of the hospital soon!
  22. Hey. I am so sorry to hear that you are in the hospital that is no fun I was admitted last time as well for eating problems. What kind of eating problems are you having (just curious), mine was trouble swallowing and nausea which lead to me not being able to eat. I am sorry I have no advice on vanderbelt but i thought i comment anyways because i can relate with the eating problems. Hope you get to feeling better soon. Best of luck. ~Kayla~
  23. thanks everyone kjmom- haha reallly , that is cool yea my doctor said she wasn't going to the the gastric emptying scan becaus she said results very like you could take the test 3 times and most likely would get 3 different results so she is going to treat it as gastroperisis and if the meds work then that is what it was. Which I like cuz i hate tests they always turn out negative for me unless it is autnomic nervous system testing. Hope all is well!
  24. Hey Guys. So my pediatrician finally referred me to a new peds stomach doctor. So I went today to our local childrens hopsital, Levine Childrens Hospital and saw the stomach doctor there. First of all the doctor was much much nicer then any other ive been too! I wouldn't say she was very thorough but she did spend a lot of time with me. I am going on 2 new medications called erythromycin 250mg and senna as needed.... Has anyone been on erythromycin before? She basically said that I have delayed gastric emptying. Secondly she ordered labs.. and this is where the fun begins They said they nurses could acess my port there, but they were so not experienced to do that. Two nurses came in , I had to take off my shirt (which made me feel uncomfortable) sorry if this is to TMI i just need to vent for a second and then I had no numbing cream. When they put the needle in I screamed because it hut so bad and then all of a sudden the nurse says (there is not blood coming out) and then other nuse says oh well then you put it in wrong. So after about what seemed like 10 minutes of torture , they took it out. So they went and took blood from my arm ... By the time everything was over I felt so sick! ugh it was the worst thing. I just thoguht id let everyone know how it went and the horrible experience I had with blood draw labs today. I just needed to vent for a second sorry guys hope you understand....
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