Lette

I have this too, when I was in hospital first diagnosed with the illness they were testing my kidneys and then did the tilt table test, I have blood in the urine and I notice every now and then on and off I get it still, I just put it down to Pots, dont know tho!

I know lots of things make me really bad: Potatoes make me faint most times I eat them and Fish, Icecream and Coke a cola can make me vomit most times I eat or drink them, I should stop eating so many things but I just feel life is to short! LOL!

Hi all, Its been a while since I was on here, I was doing so well and recently I have been fainting all over the place and had a really hard time during 'That time of the month'!! But anyway!! I was wondering if any of you knew more about Pots and EDS, I have been properly diagnosed with pots but my specialist and a few Dr.s I have met think I have EDS also as I have sore and hyper flexable joints, stretchy, see through pale skin adn the scary part is I bleed from various areas without prior injury or force, namely Teeth and other sensitive areas, this is what makes the doctors think I may have vascular EDS. So I was put on a waiting list here in the hospital I go to here in Ireland and I hear nothing for ages (about 4 months) so I decide to ring and see what the story is, only to be told I have been put on a 2 year waiting list before ill be called...!!! If I have Vascular, I have read and have been told it could be deadly!!! I need to know before we decide to have kids or before something bad happens, 2 years is just not possible!! I am doing everything I can to get back to my specialist before my next appointment in January but right now I am at a loss as to what to do!!! :-/

Bump! its illegal over here!

WOW!! I have been woken out of my sleep with this pain over tha last 2 days, I thought it was just my pillow being the problem, but now I wonder?... Also today I got really bad pain in my neck and up in my temples, a fierce bad headache... bloody Dysautonomia! :-/

wow!! I thought everywhere had Lego, they are colourdy (some say childish, but I think you can never be too old for it) Building blocks that click together so you can build things! Its a toy really! I'm a big kid!!

Thank you so much for checking out my pics :) Yup there are many old churches and cathedrals here in Ireland people can get married in :) I will be adding pics of this one very soon ;)

Hi there, yes I take oe 2.5mg 3 times a day, I will be seeing the specialist on Monday so he may up y meds then :) Im doing nothing but resting as I ended up back in hospital on Monday after fainting 7 times and stopped breathing, it was all very scary but resting up now and doing well again

Crates of Powerade (Our version of gatorade and it tastes alright!) Chocolate covered pretzels, compression stockings, my puppy (a little cavilear king charles with a massive personality) for lots of licks and cuddles, meds, the ould bedpan for when things go belly up! My husbands stunning lemon curd muffins and home made salty curry... Mmmmm!!! A selection of movies and... Lego... There has to be lego!! :P

Thank you all so much for getting back!! I went and I just about survived while I was there, I didnt last the whole day though just making the registary office and the dinner after, I didnt make it to the after party as my husband and I both assessed the situation and I had been out about 6 hours and I was feeling terribly tired and heavy headed so we decided to bring me home and a good jub too because when I got back home I crashed and burned out for the rest of the evening, bearly being able to get out of bed to make it to the loo!! My Bp was reading quiet low too, I am normally in the 90's over 60's but last night I went down to 86/51 which worried me slightly as I had eaten well during the day and was well hydrated but feeling really bad after getting home. It was a beautiful day though and it felt great to be out although my own preconceptions of wheelchairs came into account! We parked the car and firstly decided to go through a shopping mall as I hadnt been out in over 2 months. I noticed quickly how inappropriate the clothing isles were, being so tight together I was prevented from bringing the wheelchair to everywhere I wanted to go but my better half was super and pushed me almost everywhere as he was worried about me overdoing it with the self propultion though I did find it fun but tiring! I found I was very self conscious of how others viewed me and though my husband and I were the photographers for the day, because I couldnt get up and be where I wanted to be with the camera and zoom lens, people kept forgetting I was there and stood directly in the way of my shooting, it was so annoying but I understood too that I was so low down people would just forget I guess. Also street access isnt what its cracked up to be and at one stage it was funny and we both laughed, but on the way from crossing the road up over a kerb that looked ramped, the wheelchair stopped dead and I kept going nearly falling out!! The restaurant wasnt set up for wheelchairs at all and I had to be left in via the back entrance in order to get downstairs to where the reception was, I also noticed that there were no wheelchair toilets and it was lucky that I could walk the little bit to get in to one of the tiny cubicals! Food was fab though and the staff were very good to me. All in all I had a lovely time and being out for the first time in 2 months felt wonderful, I will be getting a chair again if needed and I wont feel so bad about it, ill just have to wait for my specialist appointment to ask if I will need to buy one myself or if I should just keep hiring, though they are not easy to get. It was a cool and very different experience and though I was very self conscious, the freedom was so worth it :)

HI AMANDA! :D I loved reading your post, what a breath of fresh air! Welcome to the site, I am a complete newbie too, but we will get there!! :D Pleased to make your acquaintance :)

Hi folks, I guess I am writing this to get advice on how best to go about my day! Previous to getting Pots I was asked to do a wedding photoshoot (I am a photographer) and then I got ill and now the wedding is tomorrow! Luckilly, My husband is my partner in crime and he will do the photoshoot for me, but as the couple are also friends, we have been asked to the full wedding anyway and I have been looking forward to it. As its only been 3 weeks since being diagnosed and on the meds, I am still fainting when I stand for any length of time over 10 mins or so, so I have hired a self propelling wheelchair for the day so that I can go and hopefully wont have to worry about fainting... I am still aprehensive though as this will be the first long haul social event I have been to since being diagnosed and I dont know what to do or what to expect. Have any of you managed a social outing like this in a chair or otherwise, can you give any advice to minimise any events of fainting or bad reactions? I really dont want to take any attention away from the happy couple!! The day will be spaced nicely enough, Starts at 3pm in a registry office so that will only be 20mins unlike a full church wedding. Then dinner out in a reputable local restaurant. It will be 4 hours until the reception party after this and its the duration I am worried about. 8pm the party only starts and I fear I may only be able for about an hour of it if so I will have to go home. Thankfully the couple know and understand fully the story with the day and that I may need to go home early, they are great about this but if there is any advice you may have to save my energy and strength I would greatly appreciate it **Just to add, I have never needed a wheelchair for anything in my whole life, I am worried and slightly embarrassed about this as I know theres nothing wrong with my legs and others know this, but I do faint and thats why I need it, I guess I am worried about what others think (screw them I guess but still I cant help but dwell on it!) also are chairs easy to manage?!! O_o Thanks in advance!!

Hi Michelle, Pleased to meet you :) I would be more than willing, though I am very new to pots but my specialist is supposed to be one of the top in Ireland but I am still waiting to see him since my release from hospital, but I would love to share information and help in any way I can I have never been to the states (yet!) But I used to be a fitness instructor and like you was very active up until recently, its strange to suddenly need to stop most things I took for granted before! The meds are all new, I have been three weeks on them now and I have good days but mostly bad! I have needed to cut back on the propranolol as it was dropping my heartrate very low and I was crashing (fainting and being very week) every evening after taking my last dose so I have reduced it to 2 a day instead of 3 a day. Midodrine makes my skin crawl and gived heart palpitations but I can live with that, other than that I dont know if they are helping because compared to being healty I feel crappy!! but as soon as I get my first proper appointment with my specialist I will have a ton of questions for him!! Thank you for making me feel welcome :)

Howdy Jennifer =)) Pleased to meet you on here Yes I agree with being careful with what you eat, I have noticed I feel dreadful if I eat too many high carbs or if I have sweets...oh how I love sweets!! So I try to get as much home cooking with all natural ingredients into me, luckily my Husband is an amazing cook and has a flare for cooking everything from scratch, no jared or tinned stuff and I always feel good after his food Loads of water and Ginger tea workes wonders for nausea!!

Hahaha I was wondering was it ou actually!! :P For the powerade, my husband said the general story to the local shopkeeper about my new diagnosis and said i needed to keep hydrated using powerade and would it be possible for him to order a few extra crates for me when he is ordering stuff in and we would pay him whatever the cost, he said no problem and ordered me 3 crates of 12 and only charged something like €15 a crate which is great compared to the €3 single charge for each in the shop individually!! I love the blue one myself but he ordered green but I dont mind it works!! So I guess just be cheeky and ask! As for the BP monitor, yup got it in Lidl about 2 and a bit weeks ago for €17.99 and it works great, they come in and out of stock very regurlarly though in Lidl and Aldi so keep an eye on the websites to see when its due, also you may be able to source it cheaper again online, all the details of the make and model number is over on my blog (dunno if I am allowed add names and links and stuff but check out my blog link in my description and you can get the info there If youre in the HSE then you have easy access to the compression stockings, I was gonna say chemist or local health nurse but you know the score and I really do find they help get a bit of extra energy out of you!! as for the meds im on a ton of different ones and dont know if they are working at all yet, all I know is I am getting maaaad heart palpitations way more than ever on the meds and im very light sensetive too! Let us know how the specialist appointment goes as I will be due my first now soon too!

Hi folks, Just wanted to take the time to say hello to everyone. I am Lette from Ireland! I am 28 years old and just got diagnosed with POTS there on the 15th April after 2 weeks in hospital where I had just about every test under the sun done to me and all of which came back normal except for the Tilt Table Test where I had a huge adverse reaction which confirmed pots. On the same day I was discharged, still feeling terrible and with very little information and a ton of medication (read the signature!) 16 tablets a day in all!! I am the kind of person who needs to know how everything works and as such started researching immediately as soon as I got home and my energy levels allowed and the information overload began!! I found my way to this little forum and I'm glad I have, so much information as there is very little info here in Ireland and my family Dr. doesnt know what to do with me and I am still waiting for my first appointment with my specialist since leaving hospital on the 15th of April. I was supposed to see him within a month of being discharged and im on week 3 of being set free and still nothing :-/ My main symptoms and meds can be seen in my signature, the fainting is the worst I guess. I am also hard of hearing having to wear bilateral hearing aids, but compared to pots this doesnt seem as big a deal!! Other than all this I live, work, and play in the South West Of Ireland In County Limerick where I was Born and raised with my wonderful Husband and our little pup Boo. I am an Interaction designer, Photographer and all round creative. An Art Degree Graduate of Limerick School Of Art And Design, I also hold a Master of Science in Interactive Media from the University of Limerick. I have been a Photographer for nearly a decade now and I enjoy working with both film and manual processing as well as digital photography and digital manipulation. I also make Creative Digital Photoshop Manipulations with use for both my art and photography. I have a fun and childish sense of humour, and dont mind displaying it every now and then!! When im not being an artist I love to play with video games, toys, Lego watch movies, Gadget Hacking, listen to and create music (even though the eas are half broken!) and generally like to kick back and catch my breath and take in the world around me. So HI!! Thats me! How are you? :)

Hi s-pot, from a fellow Irish Potsie!! Its so great to find another Irish person with this, it seems so rare!! Im in county Limerick myself and just got diagnosed there at the end of April, got the tilt table test, confirmed diagnosis and then sent home on a pile of meds including Mitrodrine (one 2.5mg 3 times a day so 7,5mg in all) as well as Indreal (known generically as Propranolol, and a host of others for dizziness, nausea and to stop fainting ehich I do on almost a daily basis. Im sorry to hear that you did so well on the new dose then only to get a bad day I just finished a Masters last september in UL and I couldnt imagine if I had to go through this back then but then again now that I think of it I had a lot of symptoms crop up at the time too!! Since being diagnosed I have done as much research as my energy levels allow and I have started to document everything on my blog but I dont know if I am allowed to add the link in these forums, but I have done a few things I find do help my symptoms a little. #1: Compression socks, they aint sexy but they do help and I find I can stand for longer without fainting and have a tad more energy with them on. I go for the thigh high ones and they feel wierd but as they work I dont complain!! #2: Hydration with more than water, Powerade has become my best friend, I go through a lot of it a day and even my local shop has started getting me crates of it so I always have it at hand. I get very nauseous when not hydrated properly and find water and powerade keep on top of it well enough. On the days im very ill if I dont hydrate I am definitely worse! #3: I monitor my Hr and Bp every morning afternoon and evening with a nrw Bp monitor and a heart rate watch I got, this helps me know when I can push it a tiny bit more or when I really need to chill out and take it easy. These are very general things that I found have helped theres more over on Lettes blog and on the Irish Dysautonomia Awareness facebook page I started out of frustration, ill add the links to my signiture if I can as I dont want to break any rules here and start adding silly links!! Hope you pull through, Hugs, Lette =)