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  1. I literally put some salt on a teaspoon, put it in my mouth and wash it straight down with water. If you put it nearish the back of your tongue and don't close your mouth until you are swallowing the water, you don't tend to taste it. I find it helps a lot to do this in the morning. For some reason it can make me feel sick if I do it later in the day, but no problems with that in the morning.
  2. I've used GU Brew tabs, they have a good mix of electrolytes and I don't think they have much sugar but you'd have to check. They are by far my favourites.
  3. So happy for you and Tyler! That is amazing news!
  4. Maybe upping your fluid and salt intake (if your doctor has recommended extra salt for you) a little could help on those worse days? I don't really have any other suggestions other than resting. I'm sure some of the other people on here will be able to help.
  5. I found a bit of an update on the dysautonomia international facebook page: "Progress on POTS antibody research! Researchers from the University of Oklahoma collaborated with researchers from the Imperial College of London and Lund University in Sweden to look for adrenergic receptor antibodies in a group of of Swedish POTS patients, healthy individuals and individuals who had vasovagal syncope without POTS. The results were presented during last weekend's European Society of Cardiology meeting in London, which is the largest cardiology meeting in the world. We have to wait for the full paper to publish for complete details, but in summary, the researchers confirmed prior findings that serum from POTS patients contains antibodies that inhibit the function of alpha1 receptors and antibodies that stimulate the beta1 receptors. Alpha1 receptors are responsible for constricting blood vessels, so inhibitory alpha1 receptor antibodies can cause too much vasodilation, or not enough constriction in response to standing. Beta1 receptors are involved in setting the heart rate, and POTS patients with higher heart rates on standing had higher levels of the beta1 antibodies. Healthy controls and patients who had vasovagal syncope (also known as neurocardiogenic syncope) without POTS did not have these antibodies. It is likely that different POTS patients have different levels of these antibodies, and it is possible that other antibodies may play a role in POTS as well. Most known autoimmune conditions, like rheumatoid arthritis or Sjogren's syndrome, are associated with dozens of different antibodies. POTS has historically been considered a very heterogenous condition, so it's possible that not everyone has an autoimmune form of POTS. We look forward to additional research on this topic, which represents a whole new way of thinking about POTS, and opens up the door for potential new treatment options once more is understood about these antibodies and how to treat them in POTS." This looks very interesting. I'm not sure if it's the same antibodies they were looking at but it looks like something similar.
  6. Hi navyblue, Welcome to the forum! I read right through your post, but I'm not sure I'll be able to answer all the questions! Sometimes it does feel good to just write it all out though doesn't it? With your heart rate numbers it does seem that POTS could be a possibility. Although it would seem to be a mild case as your only symptom is dizziness, if I've got that right? But I do know how annoying that can be, how you just want to feel normal again, and how disconcerting it can be when you have symptoms but no diagnosis. The best thing to do would be to see a doctor who knows about POTS. Hopefully your new PCP will, but if not you could see if you could get a referral to one of the doctors on this list: http://www.dinet.org/index.php/physician-list?view=physicians I would think that you should definitely mention your skiing accident to your doctor when telling them about your dizziness and head pressure. Seeing as it all started soon after. It's easier said than done, but try not to be scared about getting a POTS 'crash'. After all you don't really know that it is POTS yet. And even if it is you may never have really bad symptoms, or it may turn out that you have a treatable cause for POTS. There are many different possibilities. I'm sorry I can't answer all your questions, as I really don't know enough to give you a helpful answer. Stay strong and I hope you find some relief from your symptoms soon.
  7. To those who are going, please update us if there is any news about the research that's going on! Have a great time!
  8. Hi, It sounds like it may be a good idea for you to see a doctor who knows about dysautonomia. Here is a link to a list of doctors from the Dinet website: http://www.dinet.org/index.php/physician-list?view=physicians Of course that list is not exhaustive, but it may have one near you. You can do a 'Poor Man's Tilt Test' either at home or get your PCP to do it. You lie down flat and still for about ten minutes, and measure your heart rate and blood pressure, the stand up and stand still. Measure your HR and BP at 3, 5 and 10 minutes. About the nausea. That is a big one for me too. A few years ago it was really bad and I also had something similar to what you are describing, the 'tennis ball stuck in throat' feeling. One thing which I think helped me at the time was stopping having dairy products. Maybe you could try that. It seemed to help me at the time. Nowadays I get nausea even if I don't eat dairy, but if I do it makes it worse. Anyway, the main thing is to see a knowledgeable doctor who will hopefully be able to help you. All The Best.
  9. Congratulations artluvr! Like Katybug said it can be best to squat rather than bend over if you get lightheaded. If you are getting too hot could you try something like a cooling vest? Also remember to drink plenty throughout the day. If your feet are hurting from blood pooling then compression stockings can help.
  10. Hi, Welcome to the forum! That does seem like a lot of tests to have all at once over just a few days, but at least they are being thorough and I guess it might be good to have all the tests together, so you can get answers sooner. I had a whole bunch of tests before my diagnosis, but it took ages because the tests were weeks or months apart and some at different hospitals. So if you're having them all at once at one hospital at least you can go and get it over with. Hoping it all goes well. Best Wishes, Lyla
  11. (I'm sure I've asked about this before, but we have so many new members now I hope people don't mind my asking about it again.) I would love to hear what jobs (those that can work) people on here have. I'm really trying to think of a job that I would be able to do and I'm struggling! Any input would be greatly appreciated. Thanks, Lyla
  12. I'm excited to see the outcome of this study. But I can't see how it is going to 'cure' PoTS for everyone. After all he's only looking at two antibodies and they are not the only kind of antibodies that have been found in people with PoTS. And what about other underlying factors? I don't know, it just seems incredible that he's talking about a 'cure', of course I want it a LOT but I guess we'll have to wait and see the outcome.
  13. Congratulations! You did great at your interview I'm sure you'll do just as great at your first day of work!
  14. Not sure where you live, but has the weather got a lot warmer? I definitely get so much more PoTsie when the weather starts warming up. If that's the case (this sounds obvious) but try to stay cool. If I let myself get overheated, that's it, I'm out! Electrolyte drinks can really be a good help, some people use Nuun tabs, I like the GU Brew tabs as they have less artificial stuff in them, but anyway there's a big choice of different ones you can try. It's probably best to sip them slowly if you're having GI upset. It's really hard going through a flare, just know we're thinking of you and hope you get through this soon. Best Wishes, Lyla
  15. Hi, Sorry not to reply sooner. I sometimes use electrolyte tablets called GU Brew, they are good, and I don't think they have any really bad artificial sweeteners in. At the moment I'm using an electrolyte powder, I mix one little scoop with half orange juice half water in a bottle and it tastes fine. Also it is a much cheaper way of doing things than the electrolyte tablets. I got it a bodybuilding/healthfood type shop.
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