Updated: Dysautonomia Diagnosis Story – 2013

Hi Folks, this is like a blog rewind posting today – I have updated my Diagnosis story to do a write up over on the EDS Awareness Ireland Facebook page as they are doing an awareness drive and I thought throwing in my own story will only add to the awareness raising, but it needed an update, so here it is again with a few amendments :)

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This is going to be quite a long post and those of you who know me already may have read this already on my personal blog but I wanted to share this here for new people to the condition. I hate the thoughts of ‘doom and gloom’ posts which I am adamant will be very rare on this site, but I do want people to understand what can happen with this condition.

This is what happened to me and how I found out I had Dysautonomia.

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 my husband 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.

He 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. My husband 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 here in Limerick.

My Father in Law was at the house helping my better half build and finish off our new workshed out the back, He helped him 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.
The hubby 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 hubby 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, should this happen again, we will call an ambulance! ( UPDATE *2013 – actually happened twice since where I have had to 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 my husband 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 the better half 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 of course 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. The hubby 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, 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, MRI, 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 Table 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 my husband was with me and I 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 if my husband was 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 then 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 reffered 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.

My husband 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?  its just stupid!

Friday came and finally, I had the Tilt Test. 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 pre 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 quite 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 9 tablets a day, down from originally 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, when 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 also have  EDS (hyper mobility and other symptoms) which I have just been diagnosed last week with Benign Hypermobility Syndrome as well as POTS until I get genetic testing to absolutely confirm EDS. I have been referred to a rheumatologist for further tests and investigations.

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?!

*UPDATE: October 1st 2012: 

As I was still waiting the following year (and still currently am waiting now at the end of 2013!) for the appointment to see the rheumatologist I had been referred to, Through a private appointment with specialist rheumatologist  Dr. Brian Mulcahy in Cork on the 1st of October 2012, I have been diagnosed with EDS type 3 – Hypermobility type (with some overlaps of other types) Directly affecting my joints and muscles and explains a long history of injuries (broken bones, subluxed and dislocated joints and torn and pulled muscles throughout my life. I will have to watch it going forward as it can be progressive but manageable when I am able.

It hasn’t been easy, I can still get very sick, have good days and bad days but mostly good thankfully. I have been well enough this year (2013) to go back to fulltime employment. I work from home which allows me to control my workload and get the rest I need. I am proud to say I have a job once again to occupy me and ill fight daily to keep that up :)

I am still very active in my life and do what I can and get out when I can. The only thing that slows me these days are: fatigue which I always feel but I am getting better with managing it or bad pots flare ups which are far fewer now and I get pain a lot with the EDS, especially in my legs where I find I need to rely on crutches sometimes to get around as my hips knees and ankles can be so sore and unstable.  I am very thankful to have excellent support from my wonderful Husband, My family and my friends.

This is just the start of my journey with POTS & EDS that I wanted to share with you and I have been inspired to set up Irish Dysautonomia Awareness to help spread information in a POSITIVE and encouraging light to those who have been newly diagnosed with this rare condition and to raise awareness of the lack of proper treatments or supports here in Ireland.
also, remember: BEWARE the doom and gloomers ;) There is hope and great progress in current medical research.

I will continue to keep you updated all along the way and I would just like to say Thank you all for the support and please remember, if you would like to get involved in this blog in any way, please just drop me a line at: irishpotsies@gmail.com :)

THANK YOU!!

- The Fainting Goat :)

16 thoughts on “Updated: Dysautonomia Diagnosis Story – 2013

  1. Thank you for your courage and your energy in setting up this site. You absolutely have made lemonade from the lemons life sent your wa y.

  2. Great blog! I can really relate to how you felt on your first hospital stay. Lonely and frightened was exactly how I felt! I love your positivity. I was diagnosed with pots eight years ago and was shocked and scared by the negativity and lack of hope expressed on various support forums. Like yourself I am very positive and keep active. I too have good and bad days. Unfortunately I am still not able to work but my three children keep me busy! Keep up the good fight Lette 😊

    • Thank you so much for popping in and reading this :) It’s lovely to know were not alone, the net is a great forum for that, also like you, I cant stand the winging, moaning, pity whoring in some forums (*not associating this to any particular forums or places but a lot of it does go on) so Positivity is the only way forward, I feel! :D

  3. Hi from fellow bendy potsy, have you looked into Chiari Malformation as I have been over last month & have an appt with a recommended (for Chiari) neurosurgeon as they specialise not neurologists. They think it can cause PoTS/dysautonomia.
    Unfortunately the condition has the same awareness problems.
    Gentle Hugs from across the water.

    • I only know about it on dogs as I have a pup who we thought may have it but thankfully she is fine :D In humans however, I have to do my research, I will look into it certainly, thank you for the heads up and the time to read the blog :) it is appreciated :)

      • Just did some reading there, I dunno, I think they would have noticed that in me by now with the ammount of CTs and MRIs I have had, really interesting research in it though in relation to it and EDS or other associated conditions.

  4. Even here in the states, many doctors still say “You have what?” when I say ‘dysautonomia’. I was very lucky in 1996 to have a neurologist in a small TX town who knew what the symptoms were indicating. She knew to send me to an electrophysiologist, and knew when my BP went to 44/16 on the tilt table test what was going on. I’m not sure I would have been diagnosed properly (and would likely have been told I was neurotic and hysterical) had I not had that neurologist in Kerrville, TX. I’m lucky now that my primary doc understands it. I’m on disability (after 20 years of working as an RN, having to take care of myself and the continued addition of more diagnoses and medical problems is worse than working full-time). I miss being a working RN. I loved working as a nurse. I keep my license active, since I don’t want to say I WAS a nurse…. I still am- but I’m a train wreck :(

    Keep telling your story! People need to know what we go through. <3

    • Thank you so very much for taking the time to pop in and read this, I always appreciate it :) I hope you are doing ok with this, it is a right pain in the butt, but a manageable one, none the less!! It is lovely to know there are others out there, that I am not alone, though, in a perfect world, none of us would have this!

      • I was able to get 8 more years of productivity after getting on the right meds. I still had ‘spells’, but the majority of my life was ‘doable’. Not so great now, but I still find things that are worth being alive for :) You’re not alone <3 I find knowing that is helpful, when people I know are clueless. They just can't understand what it's like as someone who has it can.

      • Unfortunately, she passed away several years ago from Lou Gehrig’s Disease. Her name was Patricia Van Reet, M.D. – in Kerrville, TX. She was an amazing physician and person. I worked with her as an RN at the local hospital, and she was simply wonderful with patients- never rushed or abrupt. I wish I knew of others to add to your list. I don’t think there’s anything like the positive feedback from a satisfied (and improving !) patient :)

  5. Diagnosis is always such a strange adventure, especially when it’s confusing and a bit of an adventure. It’s sort of morbidly fun to write and read about these things. I know I have a sick fondness of thinking back to the first time I said “MUM TAKE ME TO THE ER!” So young, so innocent. ;) Great writing, look forward to reading more.

    If you’re morbidly interested in my first adventure: http://doilooksick.wordpress.com/2012/10/08/diagnosis/

    • Hi Rachel, thank you so much for checking out this lil blog, I greatly appreciate new visitors and ill be sure to check out your blog posts also. It is strange that we ALL get a strange kick out of reading eachothers stories, it helps to make you realise, you are not alone in this :)

  6. Pingback: May is EDS Awareness Month! | Irish Dysautonomia Awareness

  7. Pingback: Dysautonomia Diagnosis Update – 2014 | Irish Dysautonomia Awareness

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