I see my Specialist which will be next on the 20th of this month and since talking to you last I can stay up all day and not have to nap, my blood pressure rises a little throughout the day after taking the meds and returns to very low again at night but the energy during the day has definatly improved. Side effects from the medication has nearly all gone, no creepy crawley skin feeling anymore and the heart palpitations have just about stopped and rarely bother me now. I can stand and walk for much longer without needing breaks and even today took a walk in Glenstal Woods for the first time since before getting sick and did great, no problems at all and even took photos!!

Yesterday I was at 3D Camp all day in UL, from about 11am to nearly 5pm, mostly on my feet and moving around, I did a presentation for 30mins standing and despite technical difficulties it was very well received and it went great. I then did a demo of my project during the lunch break and then straight onto an Arduino workshop upstairs in the computer lab with the wonderful help of my better half, Keith. Overall it was a busy and fantastic day of talks, workshops and meeting new people and it was the first day I had been out for so long since my stay in hospital and did really well.

I have no more news other than how well I am doing and I am very happy with that, I just hope that I can give hope to others suffering with this ailment that despite what you may read on the internet about Dysautonomia, theres no better cure than the power of positive thinking, Wonderful supportive husband, family and friends and dont be afraid to get out there and try some things when you are up to it. As well as having a specialist who is very much on the ball with knowing his stuff about this contition and he seems to have gotten my meds right and I am just about back to a normal life in a relatively short period of time, I have a long way to go yet but I feel like im nearly there and to me thats really something. I am back to doing some work and getting out and about much more and it feels fab!  :)

Chin up, if I can do it, you can too and dont believe all the drama kings and queens online, POTS can suck but only if you give into it, prove them wrong!

This years Geek Fest in the form of 3D Camp is taking place on Saturday the 11th June at the Computer Science and Information Systems (CSIS) building at the University of Limerick. I am very honoured to have been asked by its creators (Gabriela Avram & James Corbett)
to give a talk on my FYP in Masters of Science in Interactive Media, a project I have talked about before on this blog while building it during the course. It will be held at 12:30pm in room  CSG001 where I will run thorugh a brief history of my background coming from art and design, not having ever touched electronics prior to the course and how I built and created an interactive project where you can pedal through anywhere in the world on Google Streetview using an exercise bike with readymade “off the shelf” programmes, software, and hardware, cheaply and easily. During the lunch break people interested in trying out the bike may do so as it will be fully set up for use in one of the demo rooms in CSIS. 

My husband Keith and I will also be hosting a 45minute Arduino workshop at 1:30pm upstairs in one of the computer labs in the CSIS building. Arduino is an open-source electronics prototyping platform based on flexible, easy-to-use hardware and software. It’s intended for artists, designers, hobbyists, and anyone interested in creating interactive objects or environments. For 3D-Camp, this is a beginners Arduino workshop and will suit people who are completely new to Arduino. For this tutorial we will be looking at how to set up an Arduino development environment, write and upload a small programme to the device to help you gain a basic understanding at getting started with the fun of Arduino.

You can read the press release on 3D Camp “Here” to find out more information on other workshops, keynote speakers and talkers, times and places. Its free to attend and take part in so theres no excuse for you not to pop along for some geeky fun for the day! Hope to see you there!

So I am sitting here, having just read a friends blog which is blissfully written in proper English, meaningful, well thought out and has all the correct grammer and punctuation in all the right places and while I look into my half eaten bag of Fruit Pastilles, realising that I have eaten every colour bar the red ones, I also realise that I havent been trying with my own blog.

I have always found writing therapeutic and engaging but it doesnt come easily to me, its an effort that I would rather put into something else that comes easily to me and in turn requires little effort, completely negating the problem I had in the first place! but here we are, I have a blog, and effort will be had! No more mindless drivel and bad grammer. Perhaps I will try one red Fruit Pastille after all!

Today I had an appointment to see my specialist at the hospital, the first appointment with him since being diagnosed with this rare condition (POTS). I was excited at the prospect of asking my endless questions which shamefully spanned effortlessly across an A4 Sheet and I was also terrified that he would not be able to give me the answers I hoped for.

We arrived at the hospital and started the hunt for a parking space. Having being pointed to the furthest spot from the front door you could possibly imagine, I waited patiently in the car while Keith reluctantly went on a quest to find me a wheelchair for fear I would hit the floor ten paces from the spot where the car was now wedged into.

Long story short, chair aquired and after a little more than an hours wait I finally got seen.

The Dr. asked how I was since leaving the hospital and we filled him in on the hell of a month we both had just put down, Keith being effectively my carer and I being incapacitated to the point of being housebound. He was concerned about all the fainting I had managed to get myself into, like I had volunteered myself into the task!

After some tests were done he changed my medication quantities and added a new one to the cocktail.

Lots of conversation later I was set free into the wild world and I was to start my new meds immediatly. Little did I know I would get stoned off my face shortly after taking them, If I had known getting this high legally was possible I would have saved tons of money years ago!! :p

It was good squishy and the world became awash with saturated colour and mindless babbeling, however I was unaware that the mindless babbeling was coming from myself at the time, I listened indiscriminatly to this strange girls rantings anyway and much to myown amusement as well as Keiths, Lets just say the car journey home was more fun to me than it ever should have been!

When I arrived home something remarkable happened… I felt gooood, like, really good, I felt normal and once the stoned feeling wore off I felt clearheaded and as I was before I had gotten sick. It had been over two months since I felt even remotly like this and it felt wonderful! I immediately decided to do stats readings, first while sitting and things looked like usual, Low BP and low heartrate, then while standing and things looked… the same! Usually the blood pressure would drop and my heartrate would go tachycardic but not now! Blood pressure staying stable and the heard rate not rising up above 80-ish bpm!! So I stayed standing for 13 minutes before having to sit just because I am unfit, doing the readings the whole way through and stable the whole time! No lightheadedness or aura of syncopy, stable readings and I felt fine!! All this after taking one new tablet… could it be working so soon? Who knows but right now I feel great and I have been all day. Now, I wouldnt be going running any marathons or doing drag races anytime soon but this is the first positive reaction to meds I have had since starting them a month ago and I feel fantastic so I’m not complaining, Now pass me those red jellies!!! =))

Last friday I was invited to a wedding, firstly as the photographer prior to getting sick but also as a friend of the couple. I had been greatly looking forward to this day and thankfully the better half could take over the work portion, taking the photos.

So because of my inability to stand for more than a few minutes it was decided to hire a wheelchair for the day to avoid any unnecessary  falling down. Medical Express in Limerick city was where we got the chair from and I got a self propelled one so that I didnt have to rely on anyone to push me around the place.

I was worried before the day itself, how people would view me in the chair, I dont know why I was thinking this way but I guess I couldnt help it, from my personal view, I knew there was nothing wrong with my legs but if I stood for any period of time I may passout and needed to avoid that possibility in the only way possible, the chair.

Once I got over the new wheels, we got ready and headed off for one of the most enjoyable weddings I have been to, it was so beautiful I lasted the service and the dinner but couldnt make the after party and I was so dissapointed as I really wanted to see the secretive video clip which we had shot with the groom in secret for his partner the week before in our house (we have now seen the clip and OMG I cant fault the Canon 5D MkII’s video capabilities, it turned out brilliant and I will hopefully be able to share it on here soon!) It was a remake of the intro to “My Best Friends Wedding”, with a real actress, Francis Healy from Limerick and it was a day of much fun However after the dinner I had gotten so tired and potsie we decided it was best that I go home to be safe. Kind of a good job I did too as my blood pressure dropped to the 80′s over 50′s and I pretty much crashed and slept the next couple of days off!!

The experience in the chair was only ok, dont get me wrong the freedom was worth it but being in the wheels was a pain in the bum (mentally only!!) I found though I was the photographer holding a nice fat lens, people didnt take much notice of me in the chair and stood right in front of me as I was low down. I also found out very quickly that certain shops and streets in town are not well equipped for wheelchairs at all!! As I said already though, the freedom to be out for the day was well worth all that

I had been potsie and tired and having low blood pressure for the last week since and yesterday had an event where I needed an ambulance to be called! This was the first time ever I have had that experience and if I hadnt been so sick I think I would have enjoyed it!

Basically we had been out and about yesterday morning and on the way home I started to feel very light headed and funny, got home and passed out on the way in the door. Thing is I keeped passing out (about 7 times while lying down) and wouldnt come round. I scared Keith hugely and it was decided an ambulance should be called and I was whisked away to the Regional Hospital once again! I was maaaaad to ask the driver to put on the siren but they didnt!! :p :p

The experience in A&E this time compaired to last was amazing! I was seen almost straight away, treated excellently and fast and was even offered food, a first for me at least! Thankfully after IV pain meds I was discharged with an appointment for the specialist on Monday so hopefully I will get some answers then.

Until then, toodle pips!

I’m still here, just about! I have actually been doing well enough up to 2 nights ago where I fainted twice and got really ill but  im doing ok once I listen to my body and know when to rest when I have to, I need to sleep a lot now, if I do the slightest little thing it means I sleep for most of the rest of the day. I am still waiting for the appointment for the hospital which is just downright annoying at this stage as im pretty much house bound and have so many questions, I was supposed to see the specialist within a month of being left out of hospital and starting Monday I will be into my 3rd week of being out and still no appointment, but howsever, ill wait and see. 

In the mean time the meds have been kicking in and making me quiet stoned (not that i’d complain about that!) but I have had to cut back on one of them called Indreal (generic name propranolol) as it was dropping my heart rate to 54bpm and lower which is a little too low for comfort. It was also causing major heart palpitations and I also noticed that after every evening dose of meds i’d usually crash so my Dr. said to cut back to 2 or even one a day instead of the usual 3 a day. I am currently on 16 tablets a day so any cutback is fine by me!!

Other than all that I have been out and about more, mainly as a passenger in a car but its nice to get out either way. I have also walked about a little ways from the car while taking lots of rests and breaks which to me means everything to be out of the house. I brought the camera too and its nice to be taking photos and videos again. The POTS videos will be starting over on my Youtube channel very soon I am trying to work on a documentary style one which is taking a bit of time so Ill probably start off with a view vlogs to get things rolling quicker until the other one is finished. I also upgraded all my camera gear previous to all this happening and the video capabilities of the 5D MkII are stunning so Keith and I hope to do a proper documentary with a director/editor friend of ours very soon also, but more about that as it comes up

I have noticed using a few items that help me in day to day activities that I thought I would share for those who might like to know. 

Because one pair of weird support stockings is never enough!!

After being advised by my Dr’s in the hospital before leaving, they gave me and told me to get some Compression or Embolism Stockings to help stop the level of blood pooling that happens in my legs. They have proven very helpful and on the days I don’t wear them I usually faint, when I do I can stand for longer and usually get more hours awake during my day so I highly recommend these for other Pots or Dysautonomia sufferers. They can be gotten from any pharmacy or from your local health nurse, also this brand: ‘Jobst‘ are excellent for support stockings of all different colours, shapes and sizes which is great to colour code with clothing and are far prettier than the usual plain white ones you get at the pharmacy! You can get half leg, up to the thigh and tights style stockings so which ever works for you, personally I find the higher the stocking the more support and benefit they are but each to their own and find what works best for you. Not only that but they suck everything in!! Thats gotta be good right?!! :p

Sunglasses are now a lifesaver! I don’t know which of the tablets are doing it to me (and it is the meds as the Dr. told me it would happen I just cant remember which one does it!) but I have become highly light sensitive and my prescription sunglasses from long before getting diagnosed with Pots are getting more use than ever, especially in this intense weather we have been having as of late. If you dont have sunglasses and are finding this with Pots/Dysautonomia meds I recommend a high UV filter in whatever shades you decide to get, dont skimp and get cheapy ones because they will ruin your eyes and have zero UV protection which will damage your eyes in the long run. Pay well once and mind them, it will be well worth it!

A blood pressure monitor and a heart rate watch are 2 things I have picked up and have started tracking my daily stats. Not only for myself but for my Dr’s as I will be seeing them so infrequently I would rather keep a full history on the days they haven’t seen me. I find them excellent for allowing me to slow down when I need to and for when I know I can push myself that little bit harder too. 

The heart rate watch is pretty cool as it doesnt need a chest strap and I got it on sale at Amazon. Its a Womens Sportline 710 analogue heart rate monitor watch and is very accurate and not as bulky as other heart rate watches. Click on the link there if you want more details but its currently on sale on Amazon for half the price you would buy in stores. 

Sanitas Blood Pressure Monitor

The Blood Pressure monitor is a Sanitas SMB 30 Upper Arm monitor and I picked this little beauty up in Lidl for €17.99!! It works perfect and I didn’t break the bank! Upper arm is considered the most accurate, try and avoid the wrist monitors, they cant give as accurate a reading (apparently, im no expert, just going by reading lots of stuff and what my Dr. said!)

Also for keeping track of my stats, I use my Android phone and have an app called ‘BP Log‘ which has a lovely clean, no nonsense interface and is very simple to use. 

Finally, during researching this new fangled illness, friends of mine came accross a blog online called OIResource.com run by a lady who has Orthostatic Intolerance and who came up with the idea of using a G-Suit Pants to alleviate the symptoms of OI. All the details and there is plenty of detail and reading there for you if your interested is on the site. I read it all over and over and thought, ‘wow this might actually work!’, it works for her why not me?

G-Suit Pants, Image from OIResource.com

Basically a G-Suit is used by fighter pilots (pretty cool huh?!) to stop the affects of G-Force on fighter pilots bodies, so that the pilots don’t pass out under heavy G pressure. The G-Suit inflates in specific areas when the pilot needs it and prevents the blood from pooling in the legs and pushes the blood back up to the heart and brain. Exactly what us Potsies need (Oh dear, I just put myself in a group now didnt I?! Potsies, well I guess I am!! So I have ordered a pair and hopefully they will be here next week. As soon as they are I will give them a full test run using the information on the OIResourse.com site and will give a full review on here once I have tested them for everyday and heavy usage. They may look silly but who cares if they work?!

So thats all for now, Ill update as things happen, thanks if your still even reading this space!!  

Lette =)

I have decided to start a new Facebook Page called Irish Dysautonomia Awareness where I can try, with the help of others to raise awareness of all types of conditions under this heading. As I have found it so difficult to get information within Ireland or even to find others with this rare condition so I hope this will be a safe haven of support and a social network for individuals to share information and support eachother. I would hope to turn this into a registered charity later on when there is a dedicated following and when I can figure out how to do that! Until then, all help and advice is more than welcomed! Please please click HERE and like the page and please help spread the word, THANK YOU VERY MUCH!

In this post I want to speak about certain things I have taken and needed to change in my life in order to make handling POTS symptoms more managable, hopefully it will help others in my situation =)

Just a quick update and thankfully things have been brighter for me over the past couple of days, little or no nausea, pain has subsided somewhat and all I have to handle at the moment is fatigue and still passing out, which hasnt happened in the past 2 days as I’m only now beginning to know my limits! My blood pressure and pulse is still very low and took a trip to my gp. yesterday to review my meds, he was going to increase the Beta-blocker I was on but as my stats are so low, if he were to increase it it would have driven my resting stats even lower and he didnt want to risk that, so I am on the same ammount of tablets each day until I get reviewed by my specialist next month.

So how have things changed for me in the last week since being diagnosed?

Well I have discovered a few things that really help the symptoms and thought it would be good to share for others who may not know about them, they are simple but seem to help me a great deal and anything that helps has to be good!!

#1: Firstly and its my savior, I have to say ginger really is a lifesaver!! I get really bad nausea in the mornings, so bad im rendered sobbing into a bucket off the edge of the bed and it really is a pitiful sight! However, Keith did his research while I was having a bad episode and he really wanted to help. We found that ginger tea works almost instantly in settling nausea and upset stomach. Tastes a bit yuck but I wouldn’t care if it helped and boy does it?!

If you have real ginger it works best, Ginger and Lemon tea bags are good too but dont work as fast or as strong. What I normally do is get a Ginger and Lemon teabag, brew it and also add a tea spoon of real finely chopped or ground ginger so that its not just the flavour your ingesting but the actual ginger itself and it works almost instantly!! Its a must!!

Keith has packed out the home cooking with ginger too and I have found I am now waking with little or no nausea in the mornings, its great and leads me to the next tip!

#2: Home Cooking and changing eating habits really help to alleviate the symptoms of POTS. People with POTS have a strange diet change and usually it goes against what every Dr. and Health pro would tell you to do! At the start of the week I hadnt cut out certain things like: Starchy Carbs, Dairy, Sweets and take away or processed foods or increasing things like Salt (20 grams a day for me but ask your Dr. for individual cases) to increase blood pressure and pulse, black coffee for heart and energy stimulation, All these things have a huge impact on symptoms. As soon as I started to follow this advice I felt great the very next day with only tiredness to battle which is easy without pain and sickness!!

#3: Keep Hydrated, it is soooo important for everyone to keep hydrated but especially people with POTS because of the fluids lost during certain symptoms (I don’t need to gross you out!). I find electrolyte drinks like Powerade excellent but others like Lucozade isotonic drinks give me headaches so you have to find the one that works for you. Electrolyte drinks hydrate faster than water but you should try to get at least 2L of fluids into you a day in the form of water mainly and then these drinks 2nd.

#4: Know how to rest during important times like showering where your body is under stress, Get a shower chair and limit the amount of overhead arm movements as this can trigger syncope/fainting episodes very easily because of the heat of the water and blood pooling in the legs. Reduce the heat of the water to what you can tolerate and before you leave the shower, rinse your legs in cold water to cause your blood vessels to constrict and pump blood back up to the heart and brain.

#4.1: If going from a lying position to standing, sit with your legs down for a few minutes before attempting to stand up, this will allow your body to acclimatise to the change of position and will reduce the risk of fast blood pooling and syncope episodes.

#4.2: If you find you slump or hit a wall in the middle of the day while up and about, take a bed break! I find even as little as an hour snoozing can give me a tiny boost of energy for the rest of the evening, its minimal mind you but you would risk further symptoms triggering if you don’t listen to your own body and take a rest when you need to!

#5: Take Vitamin D, Ask you Dr. first to be sure but its known as the sunshine supplement, this is brilliant as people with POTS may not be very mobile and cant get outside as often as they could. As well as taking all the meds we need to take, Vitamin D is known to help nearly all organ tissues in the body and it has psychological benefits,  as does real sunshine,ever heard of the winter blues? A lot of people get affected by the lack of sunshine in winter and it can actually trigger depression, its all down to the lack of vitamin D. Sometimes its hard not to feel down with an illness so increase this and you will increase happiness as well as organ tissue health!

#6: Avoid Stairs on bad days, goes without saying really but putting that pressure on your heart rate when you are already feeling low is a very bad idea and you do not want to faint at the top of a stairs!

#7: This is going to sound cheesy but THINK POSITIVE!!! I have been doing heavy research on POTS and Dysautonomia in general and the amount of what I call ‘Doom & Gloom’ videos online is frightening! Those videos or write up’s of how bad and terrible people have been feeling, Avoid this crap! Really, the power of positive thinking can really float you a long way and I’m going to the beach today! =D I CANT WAIT!! So concentrate on the things you CAN do and not the things you cant, be happy for what it is you have and not what you haven’t got, thinking like this really does make a difference. Use your time wisely and creatively and share your experience so that others can share alike, you never know, ya might learn something!!

Anyhow, that’s all for now, as I said I’m going to the beach today and I feel like a child, I cant wait, it will be the first proper outing other than being a car passenger since being out of hospital and im going to bring the cameras This makes me so excited so hopefully I will have nice pictures and maybe some video from the outing! Until then, see ya later folks and thank you for sticking reading this dribble!!

Lette xxx

The meds seem to treat the symptoms only a tiny bit but as a whole I havent changed much since being in hospital. I have enough energy to sit at the computer for a few hours then I get exhausted enough to sleep for hours and all im doing is sitting! Im currently on 16 tablets a day to treat dizziness, blood pressure, increase heart rate and to treat nausea which hits hard every morning. I dont know if they are working as I have gotten a blood pressure monitor and have just ordered a heart rate monitor watch. My Bp is still quiet low and heart rate races when im up and about or doing anything. Dizziness and syncope episodes still happening and I have a constant splitting headache. I thought some of these would have stopped by now on the meds but I will be back to the doctor at the end of the week to check the meds and I may need to increase the intake of the one that increases blood pressure so ill wait and see.

Im in limbo until I get to see my specialist until then I wont know any more!

Before I left the hospital the proffessor (my specialist) and the guy I got my 2nd opinion from informed me of the diagnosis and filled me in about what happens. When I stand (the Postural part of POTS) the blood drops and pools in my legs and pulls the oxygen away from my heart and brain. My heart races (The tachycardia part of POTS) and this makes the blood pool even faster making my body demand than I pass out and get flat so that it can regulate itself. This is as basic as I can explain it but I think its enough!!

So here is where I am right now, in a strange kind of limbo waiting to see the specialist to find out more and I guess I just have to sit on my ass until then which I dont want to do so I will need a physiotherapist to get me moving or im afraid ill seize!

I have decided to put my photography to some use and im going to make video documentaries on youtube to try and raise awareness of this condition but unlike some of the doom and gloom videos I see on there (and there are some amazing girls with some amazingly inspiring stories too) I want to concentrate more on what it is I CAN do with this condition and not on what I cant! I hope to start these as soon as I am well and brave enough to talk about it.

Until then, thanks for bothering to read this stuff! =)

Lette =)

Keith’s dad was at the house helping him build and finish off our new workshed out the back, He helped Keith carry me down the stairs and in that time I had passed out again. I woke up sitting on the hall floor with the front door open and all I remember was thinking, “Sweet Jesus the neighbors!”, I was embarrassed, confused and started crying with confused emotion.
Keith carried me out to the car and while he ran in to get a few things for the hospital trip I waited in the car trying to control my breathing. He came out and started the car, as soon as the motor started up I felt the dizziness and nausea kick in worse than ever it had been that morning, I began to hyperventilate and lost consciousness for the majority of the journey. Poor Keith thought the worst and stepped on the accelerator and went as fast as the car would allow. After the most harrowing car journey either of us have ever taken we arrived at the hospital with me out cold in the passenger seat. In hindsight, ahould this happen again, we will call an ambulance!
Next thing I know someone (An A&E nurse) is pinching my right ear lobe really hard calling my name and Im dragged out of the car towards a trolly where I lost consciousness yet again! I woke in the re-suss room with an oxygen mask over my mouth and nose, surrounded by panic and I was confused. My hands and fingers were twisted from the hyperventilation and lack of oxygen, this scared me quiet a bit but had it explained to me what had just happened and all I wanted to know was where Keith had gotten to!
I eventually found myself in a room in the A&E hooked up to a stats monitor where they were keeping an eye on my fluctuating but mostly very low blood pressure and heart rate and Keith arrived in to tell me he had contacted my Mum to tell her and that she was on her way, for some reason I gave out to him for this as I didn’t want to panic her but I guess it was for the best!
Hours passed, in fact a whole day of tests, x-rays, bloods, stats monitoring and they decided it was best to admit me for further observation and testing. Keith had left me for the night as he was told to do by the staff and I was taken to a bed in a ward of the hospital where I found myself get very uncomfortable very fast, mainly just emotionally. I found myself in a ward surround by elderly ladies, I was the youngest there and I had myself convinced it was the ward where my grandmother died earlier in the year. It turned out it wasn’t but the fact that my mobile phone had died, I was wide awake, feeling lonely and in a spare bed on the ward until they could sort me out properly the next morning with no curtain to give me privacy to change and I couldn’t go to the bathroom without assistance left me feeling very low.
Finally I slept and woke to heavy nausea, dry heaving and feeling completely wrecked after not having slept very well or comfortably and more testing started over the course of the next few days, almost all of which came back negative or normal. I went through nearly every test available, Bloods, X-rays, CT Scan, Hearing tests to rule out anything further related to my history of ear problems, Ultra Sounds, you name it I think I had it except for one test they had mentioned from the start of the week: The Tilt Test. They also had mentioned that if they couldn’t find anything in the tests I was having that I would need to be referred to a Neurologist.
While taken down for the CT Scan, I had a full syncope episode while Keith was with me and panicked the entire ward. The re-suss team were called and I remember waking on the cold floor trembling violently and feeling embarrassed once again. The nurses down there asked Keith was he my doctor as he seemed to know what he was doing with me and knew what treatment the doctors had been given me, they were very impressed with him and so am I. They placed me on oxygen, ran the CT very quickly and sent me to my bed to sleep it off with a massive splitting headache.
Days go by and I am kept in over the weekend, I still found it difficult to walk without passing out or feeling at least extremely dizzy but I was feeling a little brighter in myself. Monday morning comes and my doctor and his team arrive up to me again saying all the tests had been clear and I could return home in the next day but the I had another episode later that day where I was taken for a renal ultrasound and scared the crap out of the poor lady porter who hadn’t been informed of my condition and she rang the nurses on my ward to give out that I could have seriously injured myself if I had fallen out of the wheelchair I was in.

There seemed to be no communication, how could they not have informed her of my condition? Why did they want to send me home not knowing what was wrong with me and I was still passing out cold and not feeling much better? What the hell happened to being reffed to a neurologist if they couldn’t find anything and no more mention of the all important Tilt Table Test?!
Tuesday and Wednesday come and the same things happen, “You can go home, you will be fine, you just need to get up and get around a bit and you will be perfect!” I pass out yet again and this time we get very worried and very angry at the concept that all they seem to want is the bed I was in and to get me out of there not having the slightest clue what was causing it.

Keith decided to make a few phone calls Thursday morning, it was getting ridiculous and they were adamant to send me home! He called firstly the citizens advice who were useless and then rang a friend who works for the HSE and was advised to ring the Irish Patience Association, who were magical and gave us the advice we needed to schedule an appointment with the doctor and we requested our right to a 2nd opinion.

Within an hour I was scheduled for The Tilt Test for Friday morning at 11am and another Doctor (the 2nd opinion) was up to advise me of the course of action, It was amazing the way things turned around but it left me very nervous thinking I would be treated differently for ‘causing trouble’ and all I did was ask a 2nd opinion! Why did I feel so freaked about having to do it and the fact that it had to go that far to get the treatment I needed is just stupid!

Friday came, I had the Tilt Test and it was very traumatic to tell the truth! All I had to do was lay on the table and was strapped on and hooked up to a ton of wires and monitors watching every vital sign I was emitting. They left my BP and heart rate relax and level out then tilted the table upright to 70º where I was strapped in and had to take my own weight on my feet. I immediately felt my heart rate race and after a couple of minutes the syncope started to hit really bad. They advised me to try and fight it as the longer I stayed awake the more they would learn. It went on and on and I got worse and worse, sweating profusely and trembling violently all over, toes going numb and world going in and out of blackness…
The test was to last 40mins but they called it after 30mins where I heard one of the doctors say: “We have to call it, she is on Mitrodrine (to raise blood pressure and lower heart rate) and she is going to have a heart attack or something!”

This freaked me out but as soon at the table was tilted back I began to normalize once again but the searing headache of fighting the syncope stayed with me for days! Within 2 hours I had a definitive confirmed diagnosis.

I have Dysautonomia (P.O.T.S) Postural Orthostatic Tachycardia Syndrome. It is quiet serious and will take time to manage. I will let you google what its about as it has a collection of symptoms but is caused by a dysfunction of my autonomic nervous system.  It means long term medical treatment and I am currently on 16 tablets a day and will be treated continuously for the next 18months at least (It could be life long but we just have to wait and see). There are very few who have this and its hard to get information on it outside of the states as its only been 20 years that the condition has been properly identified and because I have the syncope episodes I am considered in the top 20% of the worst cases, id have to be wouldn’t I?!! I need life changes like how and what I eat and drink,  Exercise very frequently for very very short periods of time when my body allows, increase salt and fatty intakes and loads of water, cut out heavy carbs and dairy products, to name but a few. All signs of people that get this with EDS (hyper mobility and other symptoms) which I also more than likely have as I can do all the tests for it!, may have this for life. (will confirm everything with the doctor tomorrow!)

I was delighted to have a diagnosis before going home but I was so very angry to think they were about to send me home without knowing this, how could they do that?!

It hasn’t been easy, I am still very sick and have very bad mornings of nausea, pain and dizziness and near syncope episodes so I am kind of bed bound at the moment and cant stand up for anything more than about 5 mins without my body demanding I pass out and be flat. As a result of that, if that doesn’t clear up there have been mentions online from the majority of sufferers like me  that a wheelchair will be needed for doing things like shopping and traveling or doing anything for more than 30mins, but I would rather fight that concept tooth and nail and reserve it until I may have to deal with it. Until then I plan to kick its arse hopefully with meds and treatment.

I see my GP tomorrow for the first time since being discharged from hospital and I have tons of questions. I have to see a few different consultants including a Neurologist, Cardiologist and a urologist to help with the treatments and I plan to document this as finding information here in Ireland is non existent and I would like to raise awareness of this strange, very debilitating condition. I hope to start a youtube channel documenting how im feeling and stuff just so others can know about this too.

Thank you for your time in reading this and the next posts that I will be writing about this will be titled with (P.O.T.S) so if your not interested at least I warned ya! Sorry it was so long, but it has been an experience and a half and I really wanted to share it.
Cheers for taking the time to read folks.

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