BeforeTheMorning

Hi, When I get hot or warm it can make my symptoms so much worse. I'm sure this is the case for lots of you as well, and I'm looking for ways that I can keep that from happening so much. Particularly during the summer, my symptoms can get really really bad and I would love to hear what you all use to keep yourself cool and more able to function during the summer months. Does anyone use cooling vests? And if you do could you tell me a bit about how much they do/don't help? I realise it's not summer yet but I want to prepare in time this year. Thanks.

When your doctor asks you if you were a med student because medical jargon just rolls off your tongue! When you ask your doctor if it could be PoTS and he has to ask you how it's diagnosed! When you get excited about different types of salt, "Ooh look, it comes in pink too!", and you are the only person who looks at the salt content on items and exclaims about how stupidly low the salt content is! "What! These potato chips now only have as much salt in them as a slice of bread!!! How rubbish is that?!!!" When you could seriously write a guide book of all your local hospitals!

Bigskyfam, I am so sorry! Sending you a hug.

Hi, I know it can be really really hard to wait for the results, when I had my testing done I had to wait three months! But hang in there, you'll get your results tomorrow! Even if you didn't meet the criteria during this tilt table test I don't think that's the end of it, I know some people have had more than one TTT. Just wait and see what happens tomorrow. I really hope that it goes well, I know the testing phase can be really difficult and I hope you find answers soon. Best Wishes, Lyla

Hi, Sorry this isn't really a dysautonomia question but I thought some of you would probably know. I am supposed to be getting a blood test to check for celiac disease, because of all my gi symptoms. I am eating mainly gluten free at the moment but over the last couple of weeks I have been having some gluten. My question really is, is there any point getting the blood test now or do I have to have been eating gluten for longer before the test? Thanks.

Hi, I haven't actually had the tilt table test but I've had the equivalent test where you're lying down and then standing for about 45 minutes. I would personally recommend not working that day after the test but give yourself time to rest and build up afterwards, but of course you know your body best and what you can handle. Also caffeine can stay in your system and skew results longer than 4 hours, unless you need to I think it would be best to stop caffeine longer before the test than that to get the most accurate results. Again that's just personal opinion and not medical advice. I hope that your test goes well and you get the results that you need. Best Wishes, Lyla

I think this is to do with it: http://www.dysautonomiainternational.org/page.php?ID=200 It looks like they've given a grant to the doctors doing the research so that they can go on with the next phase.

@Batik I know it seems strange that it shouldn't have any flavour or sweetness to it, but if you click on the Nutritional Info link at the bottom of the description on the page it tells you the ingredients: PURIFIED WATER (PURIFIED BY REVERSE OSMOSIS), SODIUM BICARBONATE, MAGNESIUM SULFATE, POTASSIUM BICARBONATE

I just found this which looks great: http://propelwater.com/ It's an electrolyte drink which seems to only include, water, sodium potassium and magnesium! The electrolyte levels aren't incredibly high but they claim to be as high as gatorade I think. I know someone earlier in the thread mentioned propel, but I think they may have been talking about the other propel drinks that have sweeteners in? Anyway, I would love to get some of this to try, the only thing is I can't seem to find out where you can buy it. Can anyone else?

Oh yes, thanks for mentioning that Batik, I meant to add that but I forgot.

@Dyspatient. I think this is right: there are transporters in the gut that move glucose molecules into the blood but also drag sodium along with them so that the sodium concentration in the blood gets higher and therefore more water gets dragged into the blood. Meaning you get more rehydrated. Hope that makes sense! If you want a more scientific sounding answer someone else may be able to help. This free course is amazing for learning all about that kind of thing. https://www.coursera.org/learn/physiology I learnt so much that I didn't know before about why my doctors were telling me to drink loads and eat loads of salt (I knew the basic principle behind that but it was amazing to learn how it actually works) and I also learnt about how some of the tests I'd had actually worked. It was so interesting. Anyway, sorry to hijack the thread with that. I quite like the GU Brew electrolyte tablets. I think they have some natural sweetener and some artificial sweetener but none of the really bad ones if I remember correctly. It also doesn't taste that bad, in fact it was a lot nicer than another brand I tried. I'm looking forward to seeing what Normalyte will bring out. Apparently their new product should be available by the summer. It's going to be based on a survey taken by 2,000 dysautonomia patients I think.

Thank you for starting this Katybug. And thank you Gjensen and Raisin for your posts. This is a great thread everyone.

Goschi, when my pooling is bad my feet and legs and sometimes hands turn dark purpley colour and sometimes feel painful (like you would expect when way too much blood is being pushed into them). I can often tell how much I'm pooling by looking at how purple my feet are. But occasionally I used to have times when they didn't turn purple so quickly or maybe only badly after I'd just got out of bed in the morning rather than any time during the day, and that's what I mean by saying that my blood pooling isn't as bad. Of course the blood is probably still pooling, just maybe more slowly. I hope that answered your question?

My blood pooling definitely used to vary. I could have a couple of weeks when it didn't seem to be bad at all and then it would suddenly get worse again. Strange.

Thanks for the replies everyone.

Hi, Welcome to the forum! I think it's really nice to post a sort of introduction, it can help other forum members to answer any other questions you might have when they know a bit of the background history too. Sorry to hear you're having bad GI symptoms. Mine have got a lot worse over the last year too and I know how debilitating it can be. Like all the others here have said I think it would be a good idea to find a new doctor who specialises in autonomic dysfunction. I hope you manage to find answers soon, I know the testing phase can be SO frustrating. But hang in there. There are lots of helpful people on this forum who will be happy to answer any questions and queries you have. Best Wishes, Lyla

Hi, I've been looking to change my diet to see if I can help my digestive problems and abdominal pain in any way. I've already mostly cut out gluten, dairy and refined sugars but I still have a lot of problems, so I've been looking into trying other diets like Paleo. I was wondering if anyone else has tried Paleo and if so did it have a positive or negative effect and how long did it take for you to notice a change in symptoms? I'd love to hear about any other dietary changes people have made that have helped too. Thanks.

Does anyone know when there will be results from the larger study?

Thanks looneymom, I'll have to do some more research, and see what comes up.

I saw my POTS doctor once, a year ago, but don't have any other appointments to see him as he has like a 14 month waiting list. I do get to speak to one of the nurses every six months though. I got started on a medication for my POTS early this year, and although it does help a little, I'm still not able to do 'normal' things without feeling really bad. I know some people have tried more than one medication and I wondered how you got your doctor to try new things, I get to speak to the nurse in a few weeks and would love any tips. I'm still young and I so much want to be able to do things and get a job so I can support myself. But at the moment I'm not well enough.

I love this! Thank you!

For me it varies a lot throughout the day and from day to day. I think generally when I get out of bed in the morning my heart rate goes up to between 130 and 140, and will go higher if I stand still for too long. I'm not sure how high it goes later in the day but it's definitely lower, unless I stand still for too long. Some days it doesn't go so high and I still feel awful. Have you tried checking your blood pressure when you're feeling bad but your heart rate is normal?

Thanks for your suggestions everyone and the links, I'm going to look around and get myself some new compression wear and make myself wear it

Hi, I had a slightly similar problem recently where I had appointments with two different people to look into whether or not I had EDS. I had good reviews of one of them but hadn't heard anything about the other one. I decided to keep both appointments and go to the first one and if that was helpful I could cancel the second one. So I went to the first appointment and it was awful and no help at all, and I was really glad I'd kept the second one with another doctor who turned out to be really helpful. Can you keep both appointments until you've had one of them and then decide whether or not you need to see the second doctor?

Hi, Your English is good and we can understand it. We also understand how hard it is to be going through all this. That time when you don't know what's wrong with you and you're going through testing can be so scary and frustrating. You said that when you are standing your legs, feet, arms and hands go blue/red, but they are okay when you are lying down. I get that especially in my feet and legs which can go really strange colours, generally purple sometimes with red splotches on, and for me the reason it happens is because of my POTS the blood vessels in my legs and aren't constricting properly so that the blood pools or collects in my legs and doesn't get pushed back up very well. This also happens in my hands sometimes, but I don't normally keep my hands still hanging down so it doesn't have much chance. I also get very purple and red hands when I'm cold, and my hands never seem to warm up unless it's the middle of summer. I also get very cold feet that tend to go numb in the winter even when I'm wearing big furry socks, and a cold nose. I also have some of the other symptoms you are describing such as the fast heart rate on standing, nausea, and dizziness. Sitting up and talking to people can make me feel dizzy, but it doesn't all the time. Has your doctor told you to keep your fluid intake up to help with dizziness at all? If not maybe you should talk to him about that, and see what he wants you to do. It's great that he has already started you on some medication! I had to wait almost a year to start mine, after it was first suggested. So have your doctors already diagnosed you with POTS and you aren't sure if they're right, or did they not give you a diagnosis? All people with POTS do have a huge variety of different symptoms, so not everyone's symptoms will be the same as someone else's. Hang in there, you can get through this and you will get a definite diagnosis in the end and hopefully find something that helps you. Best Wishes, Lyla