This is going to be a very long but quiet an interesting post I hope. I have wanted to write this post for many reasons: #1: So that I can keep a diary of what has happened now that I have a diagnosis of a condition that will change my life for the foreseeable future and that it is quiet rare enough so I have to keep track of everything for my doctors sake. #2: Because I had a dangerous experience in the hospital where the doctors wanted to discharge me before getting this diagnosis where it is vital to be medicated or it will get worse, and quiet frankly I want to make public my experience while under the care of the HSE.
On the morning of Tuesday the 5th of April I woke like any other day preparing for work and the events I had planned for, I stepped out of bed to immediate dizziness and nausea, as I found my way to the bathroom the symptoms worsened and I called Keith and told him what was going on, just as he ran to me and put his arms around me, the world went black and I had a full syncope episode and passed out.
Keith gently placed me on the floor in the recovery position, was very worried and I slowly came round, shaking uncontrollably, “I think you stopped breathing!”, he said and we tried to get up off the floor and the lights went out again. This continued at least 10+ times over the course of an hour where every time I straightened my legs I would lose consciousness and stop breathing until I came around again. Keith was freaking out and I was too out of it to realize what was going on. He called our GP and was advised to immediately get me to the Accident & Emergency of The Mid Western Regional Hospital.
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.
