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Everything posted by Foxyblue

  1. Hello everyone, I saw a neuro doctor today and he thinks I do not, in fact, have POTS as previously diagnosed by a cardiologist. He says I most likely have Neurocardiogenic syncope. I feel like the rug has been pulled out from me! All this time I thought I had POTS. All my symptoms identify with POTS. Can any of you who have NCS give some comments? Anything appreciated. Thank you, Bri
  2. Hello everyone, I have to say I was surprised to read that a few of you have doctors saying you could be better in a few years. I have not heard that. I developed my POTS during pregnancy 3.5 years ago. I had one doc say most POTS problems go away after menopause. But I know there are some people on here that have passed that stage and they have told me they still have it. Perhaps if you develop it after a viral infection it can just "go away"? I'm very confused. Bri
  3. Hello, When I first started developing POTS symptoms, this was always one of the weirdest. I would be in the middle of eating and suddenly I'd get this crazy tachy for no reason. I also sometimes get a crazy rush, like you described, if I bite into chocolate or any food that I savor for a few seconds. Definitely scary at first but now I expect it and it doesn't faze me as much. Just stay calm, take a breath between bites and it (should) subside. It does for me anyway. Good Luck:) Bri
  4. Hi everyone, Thank you all so much for the comments. I just like to "verify" a symptom so i don't feel crazy. Family members try and understand but I still feel like a hypochondriac when I bring up a new symptom. As for washing and styling hair, I definitely get tachy and short of breath, too. I used to get so mad! My hair is quite long and when I'd have to stop every few seconds I would get so upset almost bringing on another panic attack. BUT. I must say, my Mom bought me a hair dryer holder and it works great! It takes a little longer to style my hair now, but it's ok. I sit in a chair, put the dryer in the stand and use my brush while keeping my arms low. You all should try one! Thank you again for "confirming" my symptoms. I think I will try and take my bp next time I feel that way. I'm seeing a neurologist next month. I've HAD IT with cardiologists! Bri
  5. Hello everyone, I have noticed over the last year my POTS has added a new symptom. My legs become weak if I stand too long and by the end of the day, they are downright painful. I have to put them up and I can feel them "draining". I don't know if they are draining actually, but that is the best way to describe how it feels. Well, this past month my lower arms and hands are starting to feel the same way. If I lift them up too much they are starting to feel weak and wobbly and I need to put them down at my sides. These seem like strange symptoms and I'm wondering if any of you on here may have heard of these or experienced these? I'm starting to get a little worried these might not be POTS after all , they might be something else. Any comments, I appreciate. Thank you! Bri
  6. Hi Danni, I developed POTS at 24 and I can feel for you. I have found this forum to be tremendously helpful and the internet is another way I research stuff. You'll probably find that you get more info from this forum and your own 'detective' work than you get from most, if not all, doctors you see. I have, as I know many on here have, dealt with doctors who either simply do not know about POTS or they don't know very much about it. Good Luck and you should look up previous posts on here. They are a wealth of information. Bri
  7. Hi everyone, Pretty sure it was Ladies Home Journal....if not it was Redbook or one like that. Anyway, it was a little paragraph on how to de-stress after a long day. It said to put your feet up because this 'disengages the sympathetic nervous system, the one responsible for fight or flight' and this helps you relax. I wonder if this is true and why it works. Anyone? I personally put my feet up because my legs absolutely throb some days and putting them up seems to help them "drain" back up to my heart. If that makes sense. lol. Bri
  8. Hi everyone, At the urging of my mother, I have acquired a bottle of salt tablets from the local pharmacy. Has anyone with POTS tried this? If so, does it work, not work, what side effects are there, etc. Any comments would be appreciated. Thank you! Bri
  9. I have to say this sounds like a typical case of a self-absorbed bride. I've been in plenty of weddings and been around plenty of self centered, spoiled princesses who think it's all about them. This has less to do with how you might feel, how you might be inconvenienced or how you'd manage and more to do with this being her day, how she feels and how she's being inconvenienced. Trust me, 90% of today's brides are selfish and inconsiderate. Stressed out or not, I still remembered people's feelings when I was planning my wedding. It's bad enough you have to try and explain your illness to regular people- your friends shouldn't be among them. How cruel of her to make you feel you might be "missing out" on something soooo wonderful you might need to "think long and hard about it". Be glad you saw this side to her now and not after you footed the bill for the dress, shoes, tickets, bachelorette party drinks, wedding gifts, etc. At least you know all of us here understand how you feel and you don't need to think "long and hard" about whether we do. Bri
  10. Hello everyone, sorry it's long. Saw a new cardiologist on Monday. Told me "just because your TTT says POTS doesn't mean much. There are false positives with that test". I argued with him that I exhibit lots of symptoms of POTS and he said, "It doesn't matter. We can call you Pots, IST or I can call you Sally. It's all treated the same way. Take lots of salt, gatorade and try this beta blocker". He also told me the feeling that I can't take a deep breath was more "mental" than physical. So, do all of you experience this kind of condescencion from your doctors? I also told him my leg pain was getting increasingly worse and that if I walk for long periods it gets bad, bad, bad. When he asked if I had any swelling and I said no he kept cutting me off and said " I don't really make much of the leg pain." Oh really? Well, when I put my legs up at night I can literally feel the blood or whatever going back up my legs. And he also said "people with Neurocardiogenic Syncope have REAL problems, they black out, etc." all b/c I told him I have never blacked out yet except for my TTT. AAAAAAAAAAARGH! Any advice? I mean, with doctors like this, who needs a doctor? I feel like I should just treat myself. Bri
  11. Hello! My family and I are going in May so thank you for bringing this topic up. I'm right there with you about being nervous! I have been worrying about the heat, the walking, etc. I have thought about paying attention to where the benches are, lol, packing water bottles and possibly a cold pack to pop on your neck in case you feel so flushed you will faint. Also, pack a really salty snack. The salt does help sometimes with me I have noticed. Hope this helps and I hope more tips keep coming in....for the both of us! Please tell me how it goes when you get back! Thanks, Bri
  12. I have no experience with this but I want to say I will be thinking of you. I'll say a prayer for you, too! Talk about rotten luck. POTS and now cancer. I wish you well with your upcoming surgery. Bri
  13. Hello, Having Nausea and dizzyness. I know lots of you have posted about this but it feels good just to tell other people about it anyway, huh? Never had this symptom before but I did notice this past weekend all my symptoms were rougher than usual. Anyway, my nausea has been all day today along with the feeling someone is pushing my head around, with lots of dizzyness. It's actually a bit similar to morning sickness which makes me want to run screaming down the street because, I sincerely hope it is not morning sickness. I have seen all these posts that other people experience nausea like this so I'm hoping it's "only POTS ", LOL. Bri
  14. Hey, Never noticed this. I usually feel it when it's racing. But then again, when I'm upright and I don't feel it, I have not bothered to take my pulse. Hmmm. That might be interesting to try. B
  15. My symptoms are getting increasingly worse for leg pain. It used to be in the past few months if I went upstairs and sat down right away or crouched down, my legs were afire with throbbing pain. So bad that I had to kick my legs out and sit my but on the floor and let it subside. In the past few weeks, it has become not just after I go up steps but when I crouch down at all. The pain is intense until I straighten my legs out. ANyone have this and know why this is? I'm wondering what is going on in my body! ? Thank you, Bri
  16. Pat , Thank you for the search tip! It opened up a lot more info! I came up with Eulenberg's disease and Hyperkalemic periodic paralysis. Anyone heard of these? Thank you all, Bri
  17. Hey, I have been on birth control since the birth of my son two and a half years ago. I have not felt an improvement in my POTS. POTS started for me when I was pregnant. If anything, it has gotten worse. Whether or not that has anything to do with birth control.....I don't know. But it definitely did not help. Bri
  18. Hello everyone, I get occasional instances where it feels like my heart skips a beat. Then, on rarer occasions, like this morning, I get this awful seems like my heart is somersaulting and I can feel my pulse all the way up in my throat. It's a big throbbing and it feels almost like I have two different pulses: One on my wrist that I am holding to take my pulse and the other pulse of my heart beating quickly in my chest. Sorry if this doesn't make sense. I'm trying to articulate how it feels. I got kind of short of breath with it but not much and then after a minute I felt it flip again and then it all regulated, it felt like the same pulse and it was back to normal. Does anybody ever have weird things with their heart like this? I have POTS but am not on any meds. My cardiologist diagnosed me w POTS and then dismissed me by saying- "You don't need to come back in, we can just handle this over the phone from now on". I'm not sure who to call and what for. Family Doc? cardiologist? They'll just stare blankly at you anyway and say "are you under any stress?" Any ideas I would appreciate
  19. I wonder if there is a better way to search online for symptoms you have. I google "muscle weakness after exercise or exposure to cold" and I get a million wrong links. Anyone?
  20. Hello everyone, I have noticed for the past few months (and it's getting worse), sometimes I get muscle discomfort. For example, today I did my workout routine ( walking on the treadmill and as much stretching as possible). Afterward my muscles felt like I couldn't get them to do what I wanted like squeezing, typing, putting a coat on. It was like I had to make an effort to get them to contract. It's also very, very cold today so maybe that has something to do with it? Just wondering if anyone else has this and if they know why. Thank you all! Bri
  21. Sounds scary. Please, see another doctor. I know, I know...another doctor...more fun...but this sounds weird. B
  22. Thank you everyone for "confirming' this symptom. It always makes me feel better when I come on here and throw an obscure symptom out there and nobody rolls their eyes or dismisses me. You guys just comment if you have had it and it's like it's validated then. Thanks everyone! B
  23. Sorry, I forgot to add this in my last question. Just as this year's weather has changed from warm to chilly, I have noticed when I come in from the cold I have difficulty using my muscles. My hands feel stiff, even my face sometimes, and my legs feel stiff. Its like it's extra hard to clench my fist or hold something. Anyone else experience this? If so, is it POTS or something else? Thanks, Bri
  24. Hello everyone, New to me this year is a seasick feeling. I call it "seasick" because I don't know how else to describe it. Usually, it occurs at the end of a day when I have particularly abused my body: dancing at a wedding, walking around all day long at a zoo. Sometimes, it hits me the next day. I'll be walking and suddenly I lose balance, hit walls and feel as if I cannot walk straight. One time I tried to sit up in bed and I just could not do it. I swayed badly every time I started to. Also, the other day, while sitting, I rolled my eyes at something and I felt horrible. My head felt like it was swaying, my balance was off and the room looked like it shook. It only lasted a second. Anyone have any of this stuff? Thanks, Bri
  25. Hey everyone, After reading some posts I gathered alot of us have children. Did any of you that have children develop POTS during pregnancy? I'm wondering b/c I developed it early in the pregnancy and it stayed with me after I delivered. Bri
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