Syd

I've only just started running on the BB's, but I was able to go from no exercise at all(except from max half an hour walking a day) to do a 5k non-stop on my second run. I did have some symptoms afterwards, but not the fatigue (without the BB's I would have been curled up on the floor). Although I definitely had an easier time running pre-pots, I'm doing a LOT better running on BB's than I did off them. Unmedicated, I can hit 190bpm walking, so it it amazing to be able to run with a pulse of 160 now. My body/legs feels heavier than without the BB's, but I don't get shortness of breath until I'm actually giving some effort, and that makes running a lot easier. However, although my bp is extremely low, it does rise when it's supposed to, so I don't pass out. My guess is, that if your lucky and the BB's help you overall, they will also help your running - but then again I'm no doctor...

I have a usb-disc dog tag that I got on amazon. It has one part that you can engrave and then the disc where you can put full and up to date info. I don't pass out very often, so I never had the chance to see if the EMT's plug it in or not, but if you're unconscious and they find it, then I'm pretty sure they would have to... Anyway, it takes away some added stress, knowing that you won't have to try to explain what's going on when you're borderline conscious, so I'm very happy with it

I take 50mg occasionally, and it makes me feel better too. The effect seems to vary from time to time, though, it makes me pretty nauseous and spaced out sometimes. I don't think it would help much if I was having a good day with some energy, because I seem to have less side effects the worse I am when I take it. If I'm feeling ok (on a pots scale, not a healthy person's scale;) ) the side effects are stronger and outweighs the benefit. I usually take it at night, and then it makes me wake up somewhat rested as compared to my usual 'I feel like I just ran a marathon in stead of sleeping'. I only take it during the day if I'm on the verge of what I can tolerate as far as exhaustion/pain goes, but yeah, it does seem to give me more energy when I do. I think I'm better off taking it on an as needed basis, as opposed to every day since I can't always predict how I'm going to react. But it would be interesting to see if there would be any difference if I did take it regularly. I guess we all react very differently to drugs, but I would love to hear other people's experiences too. It does have an effect on norepinephrine re-uptake or something, doesn't it? If anyone is able to explain how this works(especially in relation to pots) I would be very interested...

I have most of the common POTS symptoms(been sick for 10 years, onset as a teenager, but realized what was going on a year ago), except for fainting and dizziness (my blood pressure, while low, does not drop when I stand up). I've been to Queen's Square in London where they say they suspect I have POTS caused by hyper mobility, and they did very quick measurements lying and standing (just did the measurements as soon as I was lying down and when I had just stood up) that showed a 50 or so HR increase. However, the waiting list for proper testing at Queen's Square is forever, and I need a proper diagnosis to explain to my school/work what's going on. My GP did a poor man's tilt where my HR went from 80 to 144 after three minutes, and when I check myself it usually goes from 50/60's to 110-130 and stays up for the 10 minutes. Anyway, I finally got a tilt test at another hospital to confirm the diagnosis, and although I don't have the numbers yet, my HR went up around 40 bpm and stayed up for the 10 minutes the test lasted, BP was normal. However, I didn't feel very ill during the test, I almost never feel ok because of my constant symptoms (mainly fatigue, pain and palpitations) but I can't say I got much worse during the test. Because of this the doctor was hesitant about giving me a POTS diagnosis, and mentioned that the Mayo clinic(I think that's what it was) recommended not giving a diagnosis when the tilt is symptomless. Now, I can understand that, but I usually do ok standing up(except when the HR increase is higher than it was on the tilt), and get worse the more I do. I can run and do quite well on endurance tests, but I get very ill afterwards, sometimes for days or weeks. I've monitored my HR with a pulse watch(and have also had a holter, at yet another hospital, that showed sinus tachy up to 190 during the day when I was active, but not exercising), so I'm pretty confident that my HR is a big part of problem because it's usually much higher when I'm feeling ill. So I was wondering if anyone knew what the doctors at Mayo(if that's where it is) do about tilts that are positive for POTS (30bpm HR increase or more) but otherwise symptom free, when the patient has a history that seem to indicate POTS or at least exercise intolerance due to tachycardia ... ? Secondly, I can do a few of the hyper mobility maneuvers, putting my palms to the floor and touching my thumbs to my wrists and I do get sports injuries easily, but could hyper mobility be the cause of my suspected POTS even if I don't have PB swings? The doctor at Queen's square said yes, but I don't understand how that would work... I just started beta blockers(was off them for the tilt) and they have helped. The doctor that did the tilt said that my nervous system probably was over sensitive, and I guess would mean hyper-POTS... So apparently I have symptoms of both hyper mobility and hyper-POTS, but I have no idea which it actually could be... Sorry about the rant, but I won't get to see a specialist for a while and I need to convince my GP to give me a diagnosis off of the tilt results. Any input would be greatly appreciated:)

Any possibility of /interest in getting her a pet? When I got sick at her age, my mum let me get a pet of my own, and that was honestly what got me through my teenage years(especially considering I didn't have a diagnosis or any treatment). You can't tell a pet you're not feeling well enough to take care of it, so you have to get out of bed, but when you do you've got someone who's really happy to see you regardless of anything else. As a mum, you would obviously have to be prepared to take care of the pet if/when your daughter isn't able to, but if you 'officially' let her have full responsibility she'd be 'forced' to try to stay healthy to take care of it and also get a closer connection than with a pet shared with the whole family. Of course, many people can't have pets. But if you can, - and she wants to, I would recommend it as it was a huge help for me at that age. Getting a Border Collie would probably be a terrible idea, but there are many types of pets that are relatively low maintenance and still have lovely personalities. Feel free to PM me if anyone wants any advice... I also used to watch TV shows with my friends and family. I worked better than movies because it's something ongoing, you can follow a show every week, or have DVD marathons:) It also gives you something to discuss, even if one of you are stuck in bed most of the day. Best of all, it doesn't take much energy because you can watch from the bed/couch and you get to live vicariously through the screen for a little bit. If you can find something with a strong (female) character for her to identify with, it could be a big help. Maybe audiobooks could be good too, if she's prefers lying in bed on her own. Of course, this is not really medical advice, just something that might inspire her to keep up the fight. Maybe you already thought of these things, but that's all I have for now. I wish you both(and everyone else in this situation) the best of luck!

I haven't posted before, since I am still in the process of getting a proper diagnosis, but Dinet has been such a help that I can't afford to keep quiet on this one... I just made a donation to the webpage, and hopefully everyone that can afford it will do the same. I am extremely grateful to Michelle for the work she has done I thought of a few more ways to make money (I think ads are a great idea, and I'm also happy to pay for membership). I noticed that there is a link to something called iGive on the donation page, and I just registered, although I'm a little confused to wether or not I need to go through that page every time I make a purchase? I've seen direct amazon links on other webpages, and if it is possible to do this in addition to iGive, maybe it would be a good idea, as it is quite visible and easy to shop through those links(no need to install anything, I think). I've just taken a quick look at the amazon site, and though I'm no expert in these things, they also have something called an 'aStore' where you can "Feature any Amazon products in a self contained online store embedded directly within your web page." and earn up to 10% when people buy (https://affiliate-program.amazon.co.uk/). How about setting up a Dysautonomia handy store with things like pulse watches, blood pressure cuffs etc. recommended by users on this site? A POTS-start pack, so to speak? I'm sure I'm not the only one here who shops online to save energy, so if we could make it easy to do this shopping through Dinet I'm sure it could be fairly profitable... Also, what about selling Dinet & POTS/Dysautonomia awareness t-shirts through Zazzle.com? It is very easy to set up (I'd be happy to do it) and a good way to raise awareness and also make a little bit of money off every sale. I'm in no position to run a webpage either, but I'd be happy to take on some other tasks