Louby

Let me know how you get on! We are starting to see lots of new types of soda over here in the UK, it's great. You may or may not have heard this but a great tip for quick rehydration is a sachet of salt, in diet coke - just pour the salt in a cup, and slowly stir the coke (really slowly though otherwise it bubbles and before you know it you have a wet lap!)

Hi Merrill i have done some search on the web, and it seems you do have it on your side of the pond. It is one of the most expensive over here (everything is ) however, it really does taste the best, (good enough for Leonardo da Vinci. good enough for me) and is not too sparkling, i tend to alternate with a scottish water as well, which isn't as nice, but it's ok and a lot less expensive. I really it hope it helps you - be keen to know how you get on... -------------------------------------------------------------------------------- San Pellegrino (believe me better in glass bottles, i don't know why) (US Address) 777 West Putnum Avenue Greenwich, CT http://www.perriergroup.com/waters/imports/ Owned by Nestle, SA -------------------------------------------------------------------------------- Spring Water Analysis milligrams per liter (mg/l)* Calcium 208.6 Magnesium 58.0 Sodium 43.8 Potassium 2.9 Chloride 66.2 Fluoride 0.7 Lithium .2 Bicarbonates 222.7 Sulfate 540.0 pH 5.2 TDS 1,074 (* except TDS, which are pars per million)

thank you for reassuring me i am not going mad I have just checked their site and this brand does seem to have a good dose of sodium, as well as magnesium & Potasium (which i believe is good for people on florinef) I shall do some further research, but think i shall be sticking to mineral from now on, for my overnight drinks.

I'm not sure if I am imagining this or not, but does anyone else drink sparkling water?? I always drink sparkling water in the evening, there is a particular brand of Italian water and it really is the very best taste, it is also full of very good minerals etc. I always keep water by my bed at night, I usually have to have a drink at about 4am, I always wake up in a terrible state with a mouth as dry as anything, and if I don't drink I can't physically get up. However, with a drink during the night it is much easier. This is the bit I am not sure if I am imagining, a couple of times recently I have put the sparkling water by the bed, and it seems to be easier to get out of bed in the morning, than when I just drink the still Can sparkling water re-hydrate you quicker?? Or is it because the water is a mineral water, rather than filtered?? I don't know, but it seems to make me feel better for a bit?? Either way I plan to stock up this weekend, before the horrors of next week. Confused in England

Sue, It is always so horrid when we find ourselves in a POTS hole, and thinking when is this going to end - the good news is that it does get better, and that as a group we are so incredibly strong, and together we can help each other, when times are tough, with friends who understand it just seems so much better. I have been told this small piece of advise so many times, but listen to your body and take every bit of today just one step at a time My thoughts are with you L

My dearest Tearose, Your right, the road is long and twisting, with lots of little and big challenges along the way. However, as you said you are with your fellow travellers who are here to listen, and to act as props to help keep you up, when things get too bad that you feel you can't go on. Just around the corner is an easier time, you have to keep strong. I hope all goes well for you, and I'm looking forward to an update in two weeks time. With love, and the biggest pile of scones, starwberry jam, harrods tea and cream, that Devon can produce. Louby

Ummm cream and scones - gosh how i could do with some of those right now, still i have my can of diet doctor pepper! I could just burst into tears at the moment, but i'm trying to keep smiling at least i have 10 days at home, to catch up on all that reading. it's a nightmare, i am usually quite a stable human being, but a couple of things happen and i turn into a wreck. (well maybe just this week, i am being over dramatic again..) My boyfriend keeps telling me that the proff, is likely to want to keep me on, even under the NHS as i am such an interesting "project" for him... he does sometimes treat me like a project, but that is a good thing i think. We shall see, i am glad that I have you guys to keep me on track (PS - off to have a pamper session on Saturday, prior to the tests, which all start on the 1st April at 09:30!)

Thanks Steph, what i am finding most annoying is that my last insurance company (my company changed, insurance companies to save a few bucks...) covered everything, and were fabulous. this ones attitude is - thats what we pay, so what if you have a really rare condition and that you can't see anyone else, go and see someone who doesn't cost so much. I'm sure if i'm sneaky i can work my way around it. It just couldn't have come at a worse time, it never rains but it pours (V.Bad week at work too)

Hello, not sure where abouts you are, however in the UK everyone is covered by the NHS, and can be seen for free. The trouble with this is, that you can be on waiting lists for years to see the few and far between experts, and can be waiting for ever for tests and surgery etc. Most big UK companies offer private health care schemes, which means you pay a small premium each month (well actually not that small) to haev the peace of mind that should anything go wrong you can be seen by the best and quickly. However, they don't cover for chronic illnesses, I am just lucky as i haven't been 100% diagnosed (to extend the benefit) they also have hundreds of caveats, as to the amounts they will pay - however they never tell you this until it's too late. I have just heard back from them and they will cover any tests i need, and they will pay for the last visit because they said they would, and did not warn me of the we only pay a certain fee, however they will not pay the full amount for my next vsist becasue my proffesor charges twice the amount, so i now have to speak with my lawyer/HR rep here at the company and hope she can do something. It looks like i may have to be added to the NHS waiting list, which means i will have no contact with a specialist until i am at the top of the list - thsi could take years. Good news is that they will cover my rheumotolgist for my first visist, as he doesn't charge quite so much. It is so frustrating, as Proff M is the only person in the whole of this country who is qualified to help me. I haev explained to them that he is the only person, and that it is a medical necessity, they don't care as it's not covered by their policy I could scream...

Hi michelle, I have downloaded all of the documents from the site, so when i come of my meds next week, i shall have lots to read! Thank you very much Louby

Hello, please go and see a cardiologist as soon as possible, and let us know how things go, of course you are scared and frightened and it is rightly justified - however go and see someone who can puts these fears into perspective and give you the very best care you need. Wishing you hugs and all the best louby

Hello me again I should change my name to moaner! I am at the moment going through a tough time, lots of tests and back and forth to various Professors. It transpires that my professor charges double what anyone else does, last year my company changed insurance providers - the last lot were great, long term illness covered and they just paid the bills. Last night I received a note, from the new company that they would only pay half of his bill, I have managed to get them to agree for the last visit I went (lucky for me they forgot to quote the standard clause, they are always meant to quote) but now I am waiting for confirmation they will pay for the next consultation, all my tests are covered but if I can't go back and get the results what's the point. I am just about to start 10 days without medication, and this is the last thing I need right now. Should hear back from them later this afternoon so I guess I just have to wait.... I am fed up with this whole POTS thing, I finally find someone who can help and I may not be able to go and see him. I could see him as an NHS patient, but the waiting list to get on his list is as long as the UK, I'm hoping he will push me up, as I am such a special case. Anyway sorry to moan, I've not been about much lately and feel terrible because I haven't had time to read many of everyone else's comments - hope everyone is doing as well as they can louby x

Let me know how you get on, i was very sceptical about the crystal working as a deodrant (sounds very strange to me that a rock can stop you from being smelly) however, apparently it really does work - my friend has never looked back. she actually started usuing the crystal, as was concerned about breast cancer, there have been loads of scares over here, with the possible link between breast cancer and deodrants. Good luck!

Thanks everyone, I am just learning about the whole EDS thing, so will take a look at the links. The proffesor hinted at EDS III - i am incredibly flexiable, but i have also been having really bad pains in my joints, and find my feet claw etc. He mentioned that the new proff may want to send me for some tests... i guess i shall wait and see I am trying not to worry too much, i can deal with POTS ( i can deal with anything) Thanks everyone Louby

Hello, in a couple of weeks I am off to see a new rheumatology professor. It seems I may have EDS type 3. I am also quite wary of researching too much on the internet, prior to a diagnose or speaking to experts - I don't want to scare myself half to death, however it does seem highly likely that I have this as well as POTS. I have noticed from the boards, that a great number of people on the boards also seem to suffer with the different strains of EDS, so I am curious to find out from the experts (I believe that is what we are) what kind of tests do they do on you, and any ideas where I can look to find out a bit more info without frightening myself half to death. Thanks everyone in advance Louby

Hello, you really should not feel stupid, I have that strange arm-pit pain! and I am used to have terrible trouble with deodorants. I tried so many brands and found one that works perfectly for me, it is very gentle but very effective - I shall post the details tomorrow as I can't remember the name. I have a friend (no POTS) who hates to use chemicals, and she uses a crystal - she said she used to smell so bad without deodorants, however this holds everything at bay, and is completely 100% natural - have you though of giving this a whirl?? I have had the pain for quite some time in my arm-pits, and I went to my doctor, this was pre POTS diagnosis, however the pain can be caused by your glands swelling - have you ever had glandular fever?? I personal seem to find they hurt more during a bad patch, and I also get a similar pain in my pulse points in my neck, I plan to talk to my professor about this in a couple of weeks. I've not had a chance to read your link, but just wanted you to know that you shouldn't feel stupid! Louby.

Dawg Tired - hee hee, glad to know i am not the only one! It was the best thing i ever did.

1. Name: Lisa, but usually called Louby (my boyfriend thinks I am completely Loopy so Louby came about as a nick name) 2. Age: 26 3. Dx: .POTS 4. Age at dx: Diagnosed at 23, however I think I have had this for quite some time. 5. Where you live: London 6. Symptoms at worst: There is such a long list, Tachycardia, extreme tiredness, needing to pop to the loo, unable to stand for any length of time, dizziness, feeling sick, inappropriate sweating especially at night, panic attacks, confusion, syncope, pain in joints (and I also get that pain in my armpits - isn't that weird! think that may be related to the pulse point pain I get in my neck and arms) pain in my neck, or pressure points, regulation of body temperature either really cold or really hot, extremely low blood pressure, unable to eat, constant thirst, trouble regulating breathing, I also get claw like hands and feet, and sometimes have trouble with bowels. The usual I guess?? Also ringing in ears, and not being able to sleep - I'll stop there. 7. Symptoms at best: I always feel tried, and have trouble getting out of bed. Usually feel a bit distant in the afternoons - and spend most of my days feeling like a dizzy blonde! (I dyed my hair last year, it's a great excuse) I also can never stand for long periods of time, and have troubles at night with sweating too much. 8. Medications/treatments, etc. that didn't work for you: I have only ever been on florinef, which most of the time keeps the really bad times at bay. I am just going for another round of tests, to see if anything better will work for me. 9. Medications/treatments, etc., that do work for you : Same as above!

Hi Everyone, I never managed to check the forum boards at the weekend so only just got your messages today. It's all done, and it was not as bad as I had thought. The clinical scientist who did the test was adorable, she was so kind and very respectful of what I may or may not feel comfortable with. She took my boyfriends numbers, just in case she needed to call him as he had to be upstairs whilst I went for the test. She also kept telling me that I should think of this as an unusual type of beauty treatment, and kept reassuring me that this powder was "new and improved" and could easily come of the skin (which most of it did, apart from in my forearms - after a soak last night it is all gone!) So at this particular hospital, you walked into a room that was about the size of a small steam room, and the heat was at 30.0c - it was really toasty, but quite nice. She was sweating practically from the moment we walked in. So I striped to my undies and laid on a bed, she then popped back and wrapped me up like a chicken, in blankets and tin foil, then every 10 minutes she came back in to make sure I was ok. 45-50 minutes later I was starting to sweat, so I was unwrapped and powder dribbled on me, turns out it went red not purple! Palpitations, and distant feeling was not too pleasant, but I felt quite safe with her. I have learnt that I sweat on my forearms, inside legs and back - not much elsewhere - I felt terrible afterwards, but after a nice class of diet coke and several pints of water, and felt much recovered. The test was exactly the same as what has been happening to me, most nights - no wonder I wake up so tried! It should also go to further building up a picture of what is going on in this pots body! thanks for all writing to me, it was nice to hear this morning as I'm back in my office. Now I just have the big ones to look forward to, where I have to come of my meds... still I have two weeks from yesterday until those.

Over the last couple of years, i seem to be becoming more squemish , I am now struggling to watch ER, which disapoints me greatly... maybe this is a little exaggeration on my part, (but it's friday afternoon) I'm sure i have read something about this somewhere, or heard something - maybe i am just going mad

I know how pathetic i sound, and i know i should be strong - anyway right now i am really not looking forward to this test. I have been told I shall not be covered in Iodine (thank goodness, they still use iodine in some testing in teh UK, and that involves waiting for your top layer of skin to remove before you return to a normal colour) I am to be covered in bright pink powder (lucky for me i like pink) which turns purple. I know i sound like such a baby, but i don't cope well with heat and this week i have finally started to feel better, i'm just scared this is going to put me back again. Anyway I have to keep my head up high and imagine I am having a tanning treatment i guess. I have tried to reach them today to ask one final question, but no joy - can i use my usual products before going, i'm guessing i can't use my creams, dedorant or perfumes?? no-one has told me. Sorry for ranting, just needed to get this out of my system!

Hi Denabob, being a single mummy is a tough job, being a single mummy with POTS must be even tougher, and at times heartbreaking. I can't possible understand what you are going through, but my thoughts are with you. From the burden perspective I can help (I hope) I have spent two years trying to convince myself that I'm normal, feeling like I am a terrible burden on my boyfriend, I never used to tell my family as they live so far away from me, and they would feel helpless. I never used to tell my boyfriend (of seven years now) when I was sick, or felt like I was in a pots hole, he could never work out was wrong, when I finally faced up to things and asked for his help, he was cross that I had kept it from him - he wanted to help me, because he loved me. Sounds like you have a similar man in your life. My boyfriend doesn't completely understand, he never will - but he tries. (he is also getting better at it, and also comes to all my appointments etc) The NDRF handbook may help, it has a section on care giving, I haven't read the section on children as care givers, but it does have a section on this. As well as one on partners as care givers - this may give you some advise. http://www.ndrf.org/NDRFHandbook.htm I hope things work out well for you, and I hope you find some peace of mind.

I'm so sorry not to have written to you sooner, I only just found your post, as I have not been well over the last couple of days, so have not been able to check the boards. A couple of weeks back, I was having a terrible time, and I told everyone of how I was sad, frustrated and frightened all rolled into one. When someone replied it was like a relief, lots of people out there in this big wide world understood exactly what i needed to hear, and exactly how i was feeling. Someone wrote to me and asked me to remind them of the following; "these are the quiet times when we have to listen to our own bodies wisdom. Eat when you can and don't beat yourself up when you just feel like you can't, lie down if your body calls for this -- even though you have 100 things to do and you feel so dysfunctional on your back. Give yourself time, it does get better again. It is the groundlessness of this moment, not knowing when we will feel like ourselves again, that makes it so hard. So break the moment down into a tiny little piece ... find a comfy pillow, take a slow deep breath and just try to be with what is ... instead of what we want it to be." So hugs from across the ocean to you, and know you are in everyone's thoughts on this board. I felt it would never get better, but it did - it will do for you too. Just try to remember all the good advise, and to be brave and strong, keep trying all the things you usually do, and have confidence that it will get better. One more thing, your absolutley right you should never wait, no-one judges us here, we are like a little family. I never thought the internet could help me so much, but it has more than I could ever imagine. take care & i wish you well very, very soon Lou

I have had exactly the same problem, it is so very disappointing... Somewhere must sell a sports watch that is more feminine, so far everything I have found is just so masculine. I had thought of purchasing a watch with a small face, and then replacing the watch strap with a pretty or unusual strap, with the intention of trying to keep the face of the watch out of view.

oooooh the therapy sounds wonderful... what i would do to feel relaxed and have a good nights sleep. another item to mention, i am going to be in my doctors office for hours next time!