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Everything posted by Iheartfrogs217

  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.
  16. Hi all, I hope you are well! I just came on to vent about my current symptoms and wanted to know how you all cope with symptoms. Thanks in advance for taking the time to read/listen! Lately, I have been experiencing bradycardia, low blood pressure, palpitations, and near fainting while laying down. I have a doctors appointment in two days and I hope they can come up with some solutions. I ended up in the ER last night because of how bad things got. I can't help but feel anxious all of the time about my new symptoms and have been getting pretty severe panic attacks because of them. I also haven't been able to sleep because of how horrible I feel (that's why I'm still on here at 2 AM). I'm only 21, but feel like I'm over 100! Do you have any suggestions on how to stop feeling panicked about horrible dysautonomia symptoms? Thanks again!
  17. Thanks for the advice! I will definitely keep it in mind. Fortunately, I don't have to be put under because my roots haven't grown around the nerve. If you don't mind me asking, did you notice any side effects from the anesthesia without epi.? Did you notice your heart rate drop at all? (I saw that this was a possible side effect online.) That said, I hope your recovery is going smoothly! Thanks again
  18. Hello! Hope everyone is doing well. In the next couple of weeks I have to have all four wisdom teeth taken out. I've never had any major dental work done and am kind scared about the numbing injections. My aunt (who does not have dysautonomia) told me that when she had a shot of lidocain her heart sped up like crazy because of the adrenaline in the shots. For those of you who have had dental work, what are your experiences with the shot without adrenaline? Or does the adrenaline in the lidocain not seem to effect your POTS symptoms? Also, I should mention I deal with a lot of arrythmias and palpitations. Finally, any advice about how to be relaxed about this appointment? Thanks!
  19. Dear Momtogiuliana, I'm sorry to hear about your trouble with BC! If you don't mind me asking, what was the name of the pill you were on? Thanks for your input. To Batik, I do have a lot of POTS symptoms besides irregular periods. I get palpitations, cyanosis, standing tachycardia, dizziness and blackouts from standing too long, general yucky feeling, and extreme fatigue. Basically, I'm a "classic" POTS case. I also do not need contraception. To Nymph, she thinks they are uneven because I haven't had a period for 8-10 MONTHS. Apparently, that's not even normal for teens. I definetly agree that natural hormones are the best. I think this is the only time where I've actually wanted my period. Lol I'm just wondering if I should take them to shed my uterine lining because I heard online that if a person doesn't shed their uterine lining in a while it could cause cancer. I know that a person can't trust everything that they read on the internet, but I certainly don't want to risk cancer. I usually never take pills, because, like you, I think natural is always best, but now I don't know what to do. Thank you for your advice!
  20. My periods have been really irregular. I haven't had a period for 8-10 months and I'm 17. (There is no possible way I could be pregnant) So I went to the doctor and she wants to put on birth control to try and even things out, however, I have some concerns. 1.) The birth control pills have an increased risk of blood clots. Since I have POTS and the blood pools in my legs, wouldn't that make the chance of a blood clot even higher? 2.) I have problems with irregular heartbeats and they especially get worse during my period. I've read on some sites that birth control pills should not be taken if a person has an arrhythmia. While I haven't been "officially diagnosed" with an arrhythmia, I highly suspect I have one. So wouldn't it be dangerous to take BC? 3.) Has anyone had any worse symptoms with POTS on birth control? And finally 4.) what is the danger of not shedding my uterine lining? I've heard possibly cancer and I was just wondering if that was true?! Sorry this got kind of long! Anyway, of course I'm going to bring these concerns up with my doctor but I'm just looking for an opinion or input and guidance. Thank you!
  21. Hey, thanks guys! I really appreciate the support! It went well. Luckily, they gave me a 30 day monitor to hopefully catch those arrythmias.
  22. I have a cardiology appointment today and I'm feeling kinda nervous! Any prayers would be appreciated! Thanks!
  23. Hi! Not sure if this is normal, but I know exactly what you're talking about. I've had that feeling several times before. Still I would get it checked to be safe, but it may be a little comforting, in the meantime, to know that someone else experiences it too. I hope you find answers soon and please let me know what you find out! Thanks! Take care!
  24. I only have two moons on both of my thumbs. On the rest of them I don't have any. From what I remember I used to have all my moons before becoming sick with POTS. I'm not 100 percent sure though. Anyway, based on what I am experiencing and what others are saying and experiencing, I think it might be linked to POTS. Interesting....
  25. Way back when I was around 9 years old, I began having PVCs. My parents took me to the cardiologist and they found nothing but just that, simple PVCs. They said I was just fine and sent me on my way. Fast forward and I would say I started to get POTS symptoms when I was about 14. I'm not for sure because nothing was as full blown as it is now. I suspect this because I was always active in sports. I was a martial artist for 5 years and was a basketball starter on a state team. Even though I worked out all the time, I still seemed to be more tired than all of my other teammates. I never really thought much of it and just pushed ahead. Then I got a really bad reoccurring virus and was out if school for about two weeks. I recovered pretty well and continued on. Then fast forward one more year and I got very ill with a sinus infection that knocked me out for another two weeks. After that I began to slowly go down hill. By March (around one year later) of my sophomore year, I felt the effects of POTS full force! Rapid heart rate, purple feet, EXTREME fatigue (I couldn't stay awake for classes which is so unusual because I love school and I'm an A+ student), palpitations and all the other yucky stuff we deal with. A year later I'm still dealing with POTS. The symptoms aren't as bad, except for the palpitations. Matter of fact they have gotten a lot worse over time and I've nearly passed out from a few. (Wow this post is getting long lol). Anyway, I guess my question is could the infection I got a few years ago set of the POTS? Does anyone know why POTS occurs in teenagers? I'm really getting anxious for answers, but I never seem to be able to find any. Thanks so much for reading this slightly long post! And thank you all for all the wonderful support I've received on Dinet! I truly feel blessed to be apart of this community!
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