Foxyblue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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