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Everything posted by surfgirl14

  1. That is true. It's like you have to show them what you know about it, and how it will really help you. Actually you are giving me really good info thanx a lot I have never heard of b12 shots every month....what are they , and why do you get them? I am just curious I have never heard of this. The IV thing is something I have been looking into for a while and I have tried to convince him to let me try it, but he is hesitant. He let me try it once, but that was mainly because I was dehydrated. It really does help me though. Are cardiolgist aloud to perscribe the IV things, and set up the surgery to get the Picc line , port, or w/ever it may be? Thanks for the reply and all the help....much appreciated I really appreciate your support ... my friend lol Well hope you got some good sleep. Thanks soo much.
  2. Thanks for the comment you put on my profile :) That was really nice! It's nice to have ppl to be there and understand.

  3. Yes Exactly! It's nice to have people who understand
  4. Thanks for the comment of my profile :) It's nice to know you have people who care.

  5. targs66- I wish I knew what it was :/ No one has been able to explain to me whey this happens. But like the previous posts I think it does have something to do with lack of blood to the brain. I have been told this happens sometimes to people with POTS.It is frustrating, and it makes me withdrawl when I am having this episodes.It makes it very hard to concentrate, and I wouldn't even want to attempt to drive when I feel like this. I do the same exact things when I am going threw this. I will be talking with someone in a conversation and then totally forget what I was saying. It is embrassing when you say "oh crap I lost my train of thought" and then you can't remember what you were trying to say. grr it gets annoying. BUt most of all I just feel soooo weird when I get these episodes. I do not get them every day but I get them several times a week. I am sorry to hear this is happening to you too, I know how awful this can be. YOu will be in my thoughts. Thanks for the reply.
  6. Naomi- Yea, it makes me feel very "spacy" and "floaty" feeling. Most def. the eye thing your are talking about goes along with the feeling I am having. It seems to get better for me when I take a good nap but for some reason that didn't happen today Well I might actually look into the sugar level thing to make sure thats not a problem....because I am a little worried that it didn't go away at all today. Thanks for the reply. Hoping you get better! Sorry you have to deal wit this too.
  7. Tinks- Yea I get what you mean. I can't really go out whe I have this feeling, it makes me feel so weird. Like an "out of it" sensation. I have just been in bed all day today due to it. I have just been sleeping on and off. Can't really get out of bed without feeling like I am going to collapse. It makes me feel really weak and drained of evrything. But usually when I go to bed and wake up it will be gone, but for some reason it has lasted the whole day? I am a bit confused about that. thanks for the reply and wish the best to you. I am sorry you have to deal with this too.
  8. Hey. Thanks for sharing it is nice to hear others people's experiences....I am not sure if I have those problems I have never been checked for that. It would be nice to know if I did or not. It is a scary feeling, I am actualling experiencing it right now
  9. Hey everyone. I was wanting to know if anyone else got this weird feeling that I experience a lot. I am not really sure how to describe it, but I am going to try to the best I can. Sooo it feels like a "spacy" feeling accompanied by extreme fatigue. And with the fatigue I can sleep for hours and hours and wake up still having the "spacy" feeling. when I feel like this I have absolutly NO energy, and am extremly weak. Makes me feel weird when I walk also. It is kind of a scary feeling, and I hate the feeling soo much. I just wish it would go away does anyone else feel like this? Help.
  10. CMReber : It is very strange, but like you said they cant find the cause and everything of POTS so im not shocked that they don't know why were having this pain. I am the same exact way! I will have the pain and then the next day it's not there? It's really weird. And I can't seem to find anything that would be triggering it. I actually just got a back brace though from walgreens, and it actually has gave me somewhat of relief from the pain. I have tried everthing from Ibuprofen to Perscription Pain drugs and nothing will help the pain. But the brace has given me some relief, not the best but it's something. Hope you are doing good, and wish the best for you. I am sorry you are having to go threw this pain too.
  11. Hey everyone thanks for the Replies back I really apprciate that. CHRISTYD- Yea it seems like everytime I go to the ER the saline helps, and was hopeful my doctor would let me keep trying it but he has yet to let me try it out again. I hope w/ever it going on with your son will get better. Hopefully mayo clinic will be able to help a lot. I go to Duke Children's and they are also a very good place. Thanks for the reply. Bella Mia - Thanks for all the infomration about the saline, and I do hope you are getting better. Your condition sounds a lot worse then mine, but I still have those days when I am not able to get out of bed. My POTs badly affects my ability to go to school, and I do not want to have to drop my courses. I am currently going to Duke Childrens right now to see another cardiologist up there to help me identify some more beneficial treatment options. My cardiologist down here in charlotte did let me try it out once but he is hesiitant to let me try it again. I am a little confused about that because, when I was in the hospital about 3 1/2 weeks ago the Saline worked tramindsly. I was admitted for 5 days and the whole time I was there with the IV, I had much more energy and didn't have any flar-ups. Again thanks for the reply I really appricate it. - It is nice to know that there are other people out there , that are going threw the same. I really love this site and the people on it-
  12. I absolutly love this song I listen to 91.9 which is a christian station where I live. Everytime this song comes on tears fill my eyes, this song just shows me that god is with me threw this all. I hope she is doing much better, and will keep her in my prayers.
  13. Hello. My names Kayla and I am 18 years old. I am currently seeing a pediatric cardiolgoist for my condition postrual orthostatic tachycardia syndrome. I have researched Saline Therapy and heard some good and bad things about it. My cardiologist let me try it once, but that was a special occasion. Everytime I go to the ER or when I am admitted and given saline treatments they dramatically help my symptoms. Does anyone do Saline Therapy regulary? I would like to know more about it and how to get the therapy regulary instead of having to go to the ER every time I get sick. Thanks.
  14. I was shocked when I came upon this because I have been having flank pains for about 2 years. I have had lots of testing done for it and no one can find anything wrong. It is quite painful, and is very uncomforable.
  15. I just went to Duke Children's last week and saw Dr.kanter. He was really good and knows a lot about dysautonomia. I also have a cardiologist down here in North Carolina and he is really good and follows up with me and my POTs. He referred me to dr.kanter to help me get better treatment and get more knowledge on my condiiton. I am supposed to be having the autonomic testing done, and hopefully I will not have to wait that long? Does anyone know what the testing entails?
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