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  1. @Derek1987 thanks so much for asking! I’m not holding up well. I’m fainting so much and I’m still really scared. How are you??
  2. Hi all, I’m here to vent. I’m fainting or coming close to fainting all of the time (multiple times a day). I’m so incredibly scared! I hate fainting so much. I’m fainting while sitting, laying down, and standing. I just don’t know what to do anymore. My doctor keeps on saying it’s just POTS but I thought POTS only caused fainting while standing... Thanks in advance for listening and replying!
  3. Hi all! I’m so sorry I am so late in responding to this!! It’s been a while since I logged in. I forgot I made a post here...brain fog. I just wanted to thank each and every one of you for your comments and support!! It means so much in such a trying time. I hope you all are well!
  4. Hi all, I am really struggling with all of this chronic illness stuff. I've been almost fainting while sitting and laying down. I get super flushed and red and have been red for over 48 hours. I'm also really, really nauseous. I'm so scared and could use some words of encouragement. Thank you so much!
  5. Hi Midori, I am so sorry to hear you are going through this. If you find out what is happening please let me know! I have quite similar symptoms and can understand the fear you experience with it. I hope they find what is happening and you get better soon!
  6. @Pistol I have not! I will have to do that. Thanks for the advice! @ANCY Thanks for your reply! I am so sorry that you go through all of those fainting episodes! Did the doctors ever tell you what causes them while sitting and/or laying down? That is what I am currently trying to figure out because it scares me a lot. They don't know what's wrong with me yet and I'm getting a ton of testing, so any advice about testing (etc.) would be greatly appreciated! If you don't mind me asking, why were you in the ICU? I hope you are much better now!
  7. Hi @Pistol, thanks for your reply! I’m so sorry to hear that you have seizures and faint. These diseases are truly horrible! If you don’t mind me asking, where did you hear that SFN can cause vasoconstriction and dialation? Do you know of any published papers that talk about this? I am seeing a neurologist, but I’m not sure that they are aware of this because they said they don’t think SFN explains the near syncope while being in a nonupright position. However, I don’t think that they specialize in ANS disorders either. Do you know how to find good neurologists that do? Thanks again!
  8. Hi there! I have been on IV therapy weekly for about 3 months and it helps a lot!! It is different in that every bit of fluid ends up in your circulatory system and creates more pressure in your veins, thus raising pressure better than simply drinking fluid. When you drink water not all of it goes directly into your circulatory system. That’s why it doesn’t make you feel as well as the IV does. Try mentioning that IV therapy is one of the most benign treatments available for POTS. It’s just saline afterall. If it makes you feel a lot better and is safe, why wouldn’t a doctor prescribe it?
  9. Hi TCP, just wondering how everything went. I hope you are well!
  10. I’m sorry I don’t have any answers, but I just wanted to reach out and say I’m in the same position. I’m a university student and can barely make it through classes let alone anything else. It is so hard to get through the day because of exhaustion and fear about what symptoms I’ll experience next. Stay strong and know you are not alone!!
  11. I would document your blood pressure before treatment and after treatment in an excel sheet and present it to your doctors. That way they will be able to see the trends you are talking about and they might be more convinced. You could also bring your bp machine in with you to your appointments. It seems to help if you can provide some sort of proof. I have been taking pictures of my symptoms (such as purple feet, red ears, rashes, etc.) and having that proof seems to help doctors take my symptoms more seriously. You could also mention the point that IV fluids are a very benign way of treating POTS symptoms. So if it helps and has very minimal risks, why not try it/prescribe it? I know how frustrating it can be when they don’t listen. Hang in there! I hope all goes well and they change their mind!
  12. Thanks for sharing! You are correct in saying there is a lot of useful information!
  13. Hi all! Lately I have been randomly almost fainting while sitting and laying down. My pulse will suddenly become thready and fast. This has been happening almost everyday and is really scary! I’ve been seeing a lot of doctors and specialists but none of them seem to know what could be causing it. Has anyone else expirenced this before? If so, what do you do to feel better and do you have any doctor recommendations? Thanks in advance! I should also add that I’ve been recently diagnosed with Small Fiber Neuropathy. If you’ve been diagnosed with this too, I’d love to hear about your experience.
  14. Hi all! I am so sorry for my delayed response! I just want to say thank you all so much for sharing your tips and tricks. Your support and advice means more than words can say! @Pistol I think it is the weather. It really seems like anytime the temperatures are in the high 80's or 90's I feel like I'm going to pass out constantly even though I stay indoors all day. Glad to know that someone knows what I'm talking about, but sad to hear that you go through it as well. You have an incredible outlook and I admire your positivity. I'm not on any meds at this point, but am getting IV fluids twice a week. Those seem to help quite a bit. @Potsie1990 Where do you get your essential oils from/which brand do you use? I'd love to try some, but am looking for recommendations for good brands. Thanks in advance!
  15. Hi Mama Sarah, I am so sorry that you are feeling so sick. Please know that you are not alone! I'm 21, was an athlete before my symptoms kicked in, and am experiencing a lot of the same things that you are. I know it's extremely difficult to not be able to do the things that you once were able to do. Allow yourself to grieve, and when you're ready, figure out ways to cope and channel energy into new hobbies. I went from loving to play sports, to finding out that I love to do crafts and read. Even though it may feel like your life is over, it's not. It's just time to figure out how to live it differently. When you need someone to vent to I'm always here and lots of other members are here too. There are a lot of wonderful people on this forum who are willing to listen.
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