This blog is one ladies dedicated attempt at raising awareness, support, fundraising and forming a social network around POTS (postural orthostatic tachycardia syndrome), EDS (Ehlers-Danlos syndrome) and all related syndromes of Dysautonomia within, but not restricted to Ireland. I am dedicated to supplying information and support to individuals who have been newly diagnosed with this disorder by sharing my own personal medical experiences with these conditions.
Our mascot is the Fainting Goat as we can faint a lot!! 🙂
This page is currently being run by 1 individual with hEDS, POTS, Gallbladder and gut dysmotility and a Seizure Disorder. They are not a medical professional, merely someone who wants to share their personal medical experiences to help others. If you have any medical matters you need advice with, please always go to your dedicated General Practitioner first 🙂 All help and support with this page is greatly appreciated, if anyone wants to help & get involved please get in touch by one of the methods below, Thank You.
You can get in touch by emailing irishpotsies@gmail.com, Leaving a comment here on the blog or you may also find us on Facebook, Twitter and Youtube Please, Like and Subscribe.
With regards to this blog, please note that on the main page, newest posts appear first so be sure to scroll down to view older postings. Also any text that is blue in a given post is a link and may be clicked on for further information.
Symptoms of dysautonomia are numerous and vary widely from person to person. Since dysautonomia is a full-body condition, a large number of symptoms may be present that can greatly alter a person’s quality of life. Each patient with dysautonomia is different—some are affected only mildly while others are left completely bedridden and disabled.
The primary symptoms that present in patients with dysautonomia are:
- Excessive fatigue
- Rapid heart rate or slow heart rate
- Orthostatic hypotension, sometimes resulting in syncope (fainting)
- Very low blood pressure
- Pain in joints, bones and muscles
- Excessive thirst (polydipsia)
- Lightheadedness, dizziness or vertigo
Other symptoms frequently associated with dysautonomia include:
headaches, pallor, malaise, facial flushing, salt cravings, mydriasis, constipation, diarrhea, nausea, acid reflux, visual disturbances, orthostatic hypotension, numbness, nerve pain, trouble breathing, chest pains, in some cases loss of consciousness and seizures. To name but a few, Every individuals experience of these conditions may vary hugely.
Irish Dysautonomia Awareness 
Wow, i have no idea what is wrong with me but a lot of these symptoms ring true, i have been being treated for hypothyroidism, which seems ok, and now currently for Vitamin D deficiency, ME/Chronic fatigue is likely to be the ultimate diagnosis but i am literally punching the air reading some of the stuff you describe with the relief of thinking this might not all be in my head (my symptoms are not as severe as yours, have never fainted but find standing, walking up slopes, and stairs very taxing, among other things). anyway just wanted to say well done for setting up the page and i hope you continue to manage your symptoms and be well, whether this turns out to be my issue or not. so frustrating that doctors seem to know so little in ways. Love the goat also!!!
YEAY!! I am glad it has helped and make you punch the air! 😀 I love the goat too, I think he needs a name!! :p :p I hope you find an answer to you ailments soon and things start to look up for you, thank you for popping by 🙂
These symptoms are ringing some bells. How does someone get in touch with you to learn more about POTS in Ireland?
Hey sd, Welcome, you can write to me at irishpotsies@gmail.com and I will be happy to help in anyway I can 🙂
A very happy hello to an inspiring blogger! I just wanted to let you know that I’ve nominated you for the “Very Inspiring Blogger Award”. 🙂 Don’t feel obligated to go through the acceptance steps, I know how crazy life can get with busy schedules and such. I wanted to share your blog with my readers because I wanted them all to see how great you truly are. You have helped motivate me to keep my head up, and this is kinda my way of thanking you.
If you’re interested in accepting the award, the details are here:
http://teenswithpots.wordpress.com/2013/04/03/inspiring-blogger-award/
Thank you for being you! Hope you’re doing well 🙂
HELLO!!! Thank you so much for nominating me and Thats so coool, I won an award! 😀 😀 Sorry about the delay, I hope to blog regularly again from now, I have gotten very lazy! Thank you so much, I will do a proper blog post to thank you, shortly 🙂 🙂
I am a recently diagnosed POTS and NCS sufferer and I love following your blog!
Hi Yvette, thank you ever so much for taking the time to read my rants, but if I can help or enlighten anyone with my own experiences, that makes me very happy. Welcome to the Potsie club, I hope it is not bothering you too much and thanks again for following 🙂 🙂
I was recently diagnosed with POTS and some other medical diagnoses as well. Thanks for sharing your story! I wish you well with everything
Hi There Heather, I am sorry you got the diagnosis, but at least now you know what all your symptoms were, if there is anything we can help you with, please keep in touch here or on Facebook ❤ I may not write back right away as sometimes I have very bad health days myself, but I do always eventually check in! 🙂 I hope your symptoms are not too bad to you at the moment! Lette xxx
Hi I am originally from Galway but live in Bournemouth. I have EDS/P.O.Ts & numerous syndromes, all triggered or apparent after a mild head injury.Seizures no one can get to the bottom of. Am I mad thinking of moving back to Ireland.Do u get help to see specialists.I have had nightmare in uk. It took over 10. Yrs to be referred to the correct drs.However now alot are leavibg the nhs & going private.The waiting lists on the nhs are crazy some yrs & so some things we’ve paid for. I miss family support & loved ones when so ill. I have awful treatment locally.All in my head, couldn’t be happening, tests all fine…etc etc. However in London I am normal they sadly see lots of us patience.They are frustrated too at how long its taken for people to reach them. But I have seen over 60 specialists over 16 yr period & I’d say 5 are only any help.They are experts in their area & as the understand what we have, they are empathetic & helpful. But everything is not available on the NHS. Sadly the more I know with this, lots are miss understood, been told nothing we can do, self manage.That is in fact not true.When you meet the right consultant, get the right treatment, then Self Management is a huge part & can help some. I just found lots of old articals in Irish papers, online. Sadly reading about people who clearly hv This but not yet diagnoised.Your post is the most recent.As after my last A&E treatment, my family & myself are both disgusted & devestated & therefore considering moving back to Galway. I spend my live travelling to London. However I may spend my life travelling from Galway to Dublin or London.
I do feel for you & send big hugs as I can empathise.Galwaygirlgina
Hi Gina, thank you so much for getting in touch, you could move back to Ireland for the family support but be aware there are no Eds specialists in Ireland and only a handful of doctors aware of pots , though the awareness has gotten better in recent years, but for specialist help we need to travel to London to get help however the HSE (Health service executive- Irish NHS) will not help you to travel it all has to be self funded so there’s that 😢 But if you miss Ireland that much and are willing to travel to London from Galway it might be better for your well being to have some moral support ❤️