Made The Longlist of The Irish Blog Awards 2016!

 

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WOO!! So not only did the Blog make the long list finalists¬†for Best Health and Lifestyle Blog in The Irish Blog Awards 2016, but also one of my blog posts, ‘The Good, The Bad and the Emergency‘, made it onto the the long list for Best Blog Post!!

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I am delighted and I have you all to thank for adding your entries for the blog! I cannot tell you how much I appreciate it ūüôā From here on,¬†as far as I know, The blogs will now be judged by a panel and then those who make it onto the shortlist may need to get votes for the remainder of the judging so if I ever even make it that far, I may be back to ask for some votes! :p

For now, Thank You all once again and I will keep you posted on how everything goes ūüôā ‚̧

Lette (Fainting Goat)

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The Blog Awards Ireland 2016 – Nominations Now Open

Hi all,

I am delighted to say that Irish Dysautonomia Awareness has been entered into this years “Health & Well Being” – Personal Blog – Category in the blog awards nominations and hopefully will make the long list at least, that’s where it got last year so to make that again would be really nice! ūüôā

If YOU would (Please) like to Nominate this blog Please click HERE (Give it a minute to load, it can be slow!) or click the image below and follow the instructions. I would greatly appreciate your input, THANK YOU! You need to register with the site but you can do so quickly and easily  by signing in with your Facebook and you can control what information you give them.

Please enter The Title of the blog: Irish Dysautonomia Awareness,
Also pop in the URL of this Blog which is: https://irishdysautonomia.wordpress.com
also please be sure to enter it into the ‘Health & Well Being’ – Personal Blog – Category.
Thank you ever so much!

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Please click here and enter the info to Nominate this blog! – THANK YOU!

This year there is also an entry to nominate your favorite Blog Post from the blog here. In the last number of months the post that has raised most interest seems to be this one:
‘The Good, The Bad & The Emergency – Part 1’

I would also greatly appreciate if you have the time, to maybe nominate that blog post¬†Please and thank you most kindly! as far as I can figure, there’s no harm in trying! ūüôā

It is the same process as the first, please click Here:
Hit ‘Nominate a Blog’ – Enter the ‘Blog Post’ Title as: The Good, The Bad & The Emergency – Part 1

The Blog Post link is : https://irishdysautonomia.wordpress.com/2016/04/05/the-good-the-bad-and-the-emergency-part-1/

The Category is ‘Best Blog Post’ – Personal Blog

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Please Click Here and Enter ‘Blog Post’ Details (As I have laid out above) for Nomination – Thank You

Thank you so very much for you time in doing this each and every year, I may be back to you for more support if we make it to the ‘public vote’ part but even if it doesn’t get anywhere, a few more people will view the blog as a result of just entering and further our much needed awareness, even just a teeny bit.

Thank you once again,

Lette – Fainting Goat!

The Good, The Bad and The Emergency! – Part 2

Continuing from Part 1…

 

the last thing I remember was falling forward…

 

Time feels like it passes differently when I find myself in these situations. I remember flashes of disjointed memories but in no discernable order. I pieced together the following description from a combination of these memories and from what I heard back from the nurses and doctors following the incident.

I wake to severe pain in my head and neck, cold and shivering hard. There’s a pillow under my head.

It takes a moment for me to realise that I was lying on the floor and had my eyes closed. I groan in pain as soon as I try to move, it was the first sound I remember hearing, then it sounded like someone slowly turned the volume up around me.

A mumbling sound reached my ears and as the volume returns to normal, I recognise a woman’s voice speaking, telling me to stay still and that everything was going to be OK. Is she talking to me? I can’t remember what happened…

The space around me seems to expand some more and I can hear a number of people talking in serious tones all around me.

Wind moves my hair as someone walks with a purpose passed my head and as the breeze hits my forehead, I can feel a layer of sweat sitting on my skin.

I am confused, hurting and feel like shouting out in pain but I find it so difficult to move and actually impossible to talk. I am unable to figure out what happened or even where I was at the time, I wanted to know where my husband was but when I tried to voice my worries I found nothing came out.

Someone started to caress my cheek and spoke softly trying to reassure me. It was only then I realised that someone was sitting up against me, holding me still with her hip and her arm around my body.

People were talking hurriedly, asking for files to be sent, people to be contacted, equipment needed, then I heard heavy footsteps walk in behind me. Someone said the ambulance had arrived. I still didn’t understand.

A pinch in my right arm, it didn’t work, need to try another one… Another pinch at the back of the hand this time…

A softly spoken female with an English accent started explaining the situation to a male with a Dublin accent.

She gave my name, age, went through generally all my medical conditions going into more detail about the EDS as the male said he had never heard of it before. When he asked what happened today I heard her say to him that I had been down here in physio when I fell off the chair I had been on and had a seizure.

The male started asking different people questions as to what they saw, how long had I been sick before this happened, did anyone see if I had hit my head in the fall.

I felt another sharp pinch, this time in my left arm, someone saying they had tried a few times for a vein but had failed, then they asked for some heat packs and towels.

A female doctor introduced herself to me, kneeling down at my left side. She explained that I had a ‘bit of a faint’, and just to be safe they were going to send me to St. James’s hospital to check that I was alright.

Though I had my eyes open, from what I can remember anyway, for the life of me I can’t remember faces, or names or what was going on around me, a lot of these snapshot memories are made up from feelings associated with what happened and from what people were saying to me at the time.

I feel sudden warmth on both my arms as a woman speaks softly into my ear saying:
“that’s only heat packs and towels hun, we are trying to get a vein”

It was only when I had felt the warmth that I could begin to comprehend just how cold I had been lying on the hard floor. People started asking me questions. I wasn’t able to¬†answer them.

The Dublin male was asking should they strap me to a body board to be safe incase I had hit my head, but then he said, with the condition I had, that the board would make me very sore and uncomfortable and he didn’t want to do that to me! He decided to wrap me in blankets so they could lift me up onto the trolly without pulling on my arms and legs. Once on the trolly, they used the blankets to cushion and support my head, neck and around the edges of my body to give as much support as possible without hurting me.

I felt another pinch in my left arm again and It failed yet again. I heard the male with a Dublin accent say it was ok, that they would try to get one in the ambulance.

They finally got me into the ambulance and started heading towards St. James’s hospital. The Dublin guy was asking me some general questions, I can’t even remember what they were now but, I tried to communicate with him through gestures and nodding, though my neck seared with red hot pain any time I moved!

He began to take my blood pressure, temperature and quickly scribbled down some notes in a pad he had in one of his leg pockets.

I began to feel funny again, the world all became silent except for my racing heartbeat and ‘Darth Vader’ breathing!

Oily darkness began to envelop my vision, I tried to fight it, but, the darkness won…

 

 

A bitter, almost metallic taste in my mouth…

Darkness…

Someone trying to reassure me, explaining that I was now in Resus and being looked after, they are holding my hands…

Darkness…

A number of serious and hurried voices, pressure around my face as someone presses an oxygen mask over my nose and mouth, severe head and neck pain and I catch glimpse of a large silver scissors, cold against my skin as they begin to cut off my clothes…

Darkness… This time it feels like it lasts a long time…

I wake with a phone in my hand, I’m still in resus, wearing a blue paper gown and covered in pale blue blankets. I am a tangle of multi coloured monitor wires all keeping an eye on my vitals, an IV Phenytoin fusion is connected to the cannula in my left hand. There are beeps and people talking all around me with an occasional metallic ‘Clanging’ sound like someone putting metal instruments on a metal top table. ¬†My husband is on the phone… I can’t understand what is being said or what is going on… They take the phone off of me and all I remember feeling at the time was scared¬†because I knew who was on the phone but I couldn’t communicate with him because of whatever drugs they had pumped into me, I was completely out of it but still worried that my husband had no idea what had happened.

I didn’t really have any idea what happened, then, the darkness came back again and I slept.

Later I woke in a small room in another part of A&E, finding myself lying very awkwardly on a trolly, my ear and neck crushed sideways into my right shoulder with red hot searing pain down the back of my skull and neck… I am still attached to an IV.

Darkness… DANGNABBIT!!! I was in a lot of pain, I couldn’t move myself and knew I had to do something about it but could never stay awake long enough to find someone to help before I passed out again.

Sometime later I feel wetness under my left side. I open my eyes to find a pool of blood coming from my hand and wrist, trickling down my forearm and soaking the bed sheet from under my elbow. It seemed to be coming from a vein that they must have removed a cannula¬†from, separate to the drip that was currently being used. There was a plaster over it but as it was bleeding so heavily the plaster was now hanging off and blood oozed very slowly but freely from the tiny puncture hole in my skin. A nurse just happened to walk passed at the time I was making some sense of all this so I got her attention and showed her what was going on. She brought some fresh bandages and cleaning stuff,¬†cleaned me up, dried me off and put a fresh bandage over it this time instead of a plaster so that it wouldn’t come off again.

While I had her there I got her to help fix my neck position, I had a voice again but it was hardly there, it took some time to get my point across but we got there in the end! She even found me a pillow and the immediate comfort I felt brought on heavy dark sleep again!

A Sudden shocking pain in my wrist! I open my eyes to see a blond lady dressed in regular clothes, no nurses outfit or doctors coat. she apologises and explains that she is testing my artery for blood gases as the test they did earlier in resus was abnormal. She had to inject straight into the artery on my wrist and it was a level of pain I had never felt before, wow! She apologised once again, took her sample and went off about her business.

Darkness… unusual dreams… pain, vomiting…

The same nurse who fixed my bleeding hand¬†and got me a pillow earlier, woke me later to change my IV¬†from the infusion to a simple saline solution and to tell me there was now a bed for me on a ward upstairs, it was 01:30am and it felt like I could have been at this hospital for days. I had no concept of how much time had already passed. I thought about my husband and if he knew what was going on. It only then dawned on me that I had no phone with me, or any means of contact to anyone! The only clothes I had on when coming in here had been cut off in the Resus room, put into a dark green¬†,’patients belongings’, bag that¬†now sat in the bedside locker next to the ward bed I now found myself in. I had nothing else other than the blue paper gown they put on me in Resus. I asked if I could call him, knowing he would be awake waiting to hear news, even at this hour.

They refused, saying it was too late and that I needed rest. I was upset at the thought of not being able to contact him but I was too drained and doped to argue.

They gave me a proper material gown, instead of the paper blue one I had on from Resuss so that I could be more comfortable for the night. They gave me my night time meds I was due and I slept restlessly again until woken by the medical team later that morning.

They asked me every question under the sun, what had happened? how had I been feeling before it happened? has it happened before? if yes, when? what happened then? has it been investigated? if so what tests have been done? in what hospitals were you tested? who is your neurologist? which hospital? is it ok if we call them to access your files and your previous history of seizures?…

They told me it was the next day, Wednesday, to me it felt like I was there a week already! They hadn’t yet called my husband to say what had happened and they wanted to me to stay over the weekend until at least next Monday for observation and some further testing.

I explained to them that I had already had lots of tests for this and that they would only be duplicating the tests that already had been done. I said I would take their advice of course, they know best, but I suggested that if it was ok that I would like to get home to Limerick to my own neurologist to continue the testing that had already started down here. They agreed this wouldn’t be a problem but that they would like to go over my files first to make sure that everything is being tested as they would like it to be and they wanted to make sure my own Neurologist would look after me when I return down here.

They said they had given me benzodiazepines to try and treat the seizures, I explained that I was allergic to them, the doctor who was speaking with me said that was highly unlikely and said she would leave me home with 2 doses of Benzos just to make sure I was covered for the journey home! I asked her kindly if she would take a look at my files first and then decide from there. She agreed.

In between heavy sleep a friendly¬†male¬†nurse came over regularly to check on me, administer medication and to check my IV’s. I kept asking to ring my hubby but they kept saying it was too early. I didn’t care about the time, I knew he would be up ¬†waiting to hear what was going on. I had a vague memory of hearing him speak to me on a phone in Resus but I couldn’t tell if I had dreamed it or not!

My left arm was beginning to hurt so much and I got a small shock when I examined it. My whole forearm was extensively bruised, from what I can only guess was the staff in resus trying to get a vein and checking my blood gasses! It looked like they tried a little too hard!

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A spot of bruising!

 

A consultant neurologist came and asked the same questions again, doctors came and went, I fell in and out of restless sleep until a nurse called my name at about 11:30am to say himself had finally gotten through to the hospital and was on the phone out in the hallway. It was only now we all realised that I was a wheelchair user so they got me some wheels, a blanket and carted me out to the phone in the main corridor outside the ward I was in. It was one of those awkward hospital wheelchairs that had tiny wheels and could only be pulled backwards to move it, that was fine until I needed to get back into my bed after the call!

He was delighted to finally get through to me, he had been trying all night. Harolds Cross called him to tell him I had been rushed to St. James’s by ambulance after having a seizure in the physio room. St. James’s never called him and though he had been calling A&E all night, the phone mainly rang off the hook, he only got answered twice, the first answer being useless as the lady on the phone couldn’t locate me in the hospital.

When he did get through to me in Resus, I was so completely out of it, I didn’t take anything he said in! He completely understood and had been super worried. Thankfully we could talk now and I filled him in on everything I could remember from my side. He wanted to come up to me straight away but I suggested¬†he should only¬†be up to collect me as soon as the doctors gave me the go ahead to go. Otherwise he could be waiting around only to be told they would be keeping me in and I strongly didn’t want that.

We came to an agreement that he would ring back in a few hours to see what the news from the doctors was by then. It was lovely to finally talk with (& understand) him! We spoke for a little while more then said our goodbyes until later.

I hung up the phone and pulled the blanket around me, I was still only in a hospital gown. No socks or slippers and it was cold in the corridor. It was only now I realised I wasn’t able to push the teeny wheeled ¬†wheelchair myself! I eventually saw the male nurse from my ward and he saw me pathetically trying to push the chair back in to the ward by somehow not using my hands as they were busy holding the blanket around me! I was flapping my right foot like an idiot in a hard effort to magically ‘waft’ the chair in the general¬†direction!

I clearly wasn’t rid of all the drugs in my system just yet!

The nurse came and rescued me from my useless attempts and when back in bed I was offered some food that I had too much difficulty eating so I just left it. I couldn’t rest properly now either, having to wait for doctors and hoping beyond hope that I’d be allowed home.

A few hours pass and I am getting conscious of the fact that my husband would be calling me back and I still hadn’t heard anything from the doctors. Finally, in what seemed like the very last minute, the female, Benzo pushing doctor from earlier came back to me!

They had gotten a copy of my files and spoke to my neurologist, all was OK for me to return to Limerick and I would be seen by my own doctors in a few weeks time. She explained that they still wanted to give me the Benzos incase I needed them on the way home in the care so it was all in the prescription and discharge letter they had given me, it was up to myself if I wanted to use them or not, though they did say my own Neuro wasn’t too keen on the idea, so then why even give them to me? Eitherway I agreed to use them if absolutely necessary and all I had to do now was wait for my beloved to ring back so I could fill him in and then¬†home come rescue me!

He rang, filled him in, I waited, snoozed fitfully (pardon the pun!) and finally a little before 6pm the husband came in to find me ready to go but I still had no clothes! Everything I had was cut off me except the tracksuit bottoms I had been wearing when I cam in so at least I could throw that on under the hospital gown and they gave me a blanket I could take home with me.

Himself carted the teeny wheeled wheelchair backwards out into the night ant towards the car. It was so cold but when I got to the car it was SO worth going out into the cold to see the sight in the back seat of our car!

There, nestled in a tiny fluffy ball right in the middle of a pile of quits, sleeping bags and pillows was my little Boo (our 6year old Cavalier King Charles Spaniel who we treat like our furry daughter and will probably be the closest thing to a daughter we ever have!) It was a treat to crawl in beside her! They had the car all warmed up, I couldn’t be upright for any great length (which seems to still be happening to this day) so the better half prepared the car with soft warm fluffy things, including our favorite pup for me to cuddle into while Keith¬†battled through traffic all the way back home to Limerick.

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Boo! 

The last thing I remember before falling into a contented snooze was Boo cuddling into my chest, all covered up and warm, watching the city lights dance on the roof of the car, feeling truly happy to just be with the people I love and going in the right direction for the first time in a good few days… HOME!

When we arrived back at the house, Keith bundled me into the couch¬†and we just¬†wrapped our arms around each other. It was so good to be back where I felt safe. We slept where we sat and didn’t budge until we woke up hours later.

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I needed a few days to recover from the knock out of St. James’s before I could even lift the phone to Harolds Cross to thank the staff on the wards and in the physio room for all that they did. They really were remarkable and I would love to get a chance to go back up when I am a little stronger but I don’t know what the outcome of this is even to this day. I was told a report of the stay would be sent to my doctor and we could go from there but I haven’t heard anything back yet.

Even now, 2 months later, April 13th, I haven’t yet recovered. I have been mostly bed bound on a daily basis. Extreme nausea, vomiting, pain, Headaches I can hardly handle and so much pain and instability in my neck and the back of my skull. Severe orthostatic intolerance where if I make any attempt to sit up in bed most days my BP drops with violent dizziness and then drives me into a full syncope which sometimes leads to a seizure.

I am constantly in and out of hospital appointments here locally since returning home and there are lots of tests being done for lots of different things. I will follow up in my post on those and another diagnosis I got in early March, Neurogenic Bladder Dysfunction Рsexy, right?!

but first…

So, Fainting Goat,  what did you really think of Harolds Cross?

Well, as you can tell from the rant and a half above, I did love the place, the professionalism, organisation and expertise of all the staff could not be faulted, really! The place is fully kitted out with everything they need, it is spotless and runs like clockwork.The place just ‘works’!

The atmosphere in the place has a spark, its comfortable and theres always a small chat or a laugh or a joke to full on discussions on random stuff going on, Oh! and, Dogs! :p I also made some really lovely friends that I still talk to now, connected through Fizzbook! so that’s really nice ūüôā

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However, in saying that, there are a couple of¬†things, I would like¬†to mention, but all in all, it doesn’t take away from the experience I had of the place at all, These are just a few thoughts.

There are only 2 consultants in the RMDU unit to cover all inpatients. Both specialise mostly in arthritis and just generally know EDS. You only ever meet whichever one you are assigned to just once a week for no more than 5 – 15mins at most. Though I found my guy¬†very straight and helpful, he¬†didn’t put me wrong at any stage, they get feedback daily from the hands on team, but, personally, I don’t know if this is enough to truly get to know the needs of the patient. A 2 week stay there in the grand scheme of life with a chronic illness, is not a huge amount of time to work with people. Though, they do follow up stays as needed, which I do think is brilliant.

The staff are excellent, happy, friendly, punctual and procedural. But they are not prepared for an emergency. and I don’t think this is a bad thing. The unit is as it states, a rehab unit. As such, it does it’s job excellently, I can’t fault it for that. I did feel they couldn’t watch everyone all the time and some people were sick for a few days before attention was drawn to, for example: pain, outside illness or dehydration. and No, I am not necessarily talking about myself here.

Other than that, I cant say a bad word against the place. The only thing that gets me is, I feel there should be no reason in the world why more¬†specialist units like these cannot be more nationally available. I have stayed at many hospitals and been to a lot of different physio centers throughout Ireland with fully kitted out physio rooms with just a couple of patients and at most 2 physios working it at any one time (perhaps that is just bad timing on my part, these are just thoughts more than anything, I haven’t done any research for proper statistics or anything!) ¬†but I almost feel like the facilities are underutilised, understaffed and I would hazard a guess as to say under funded. ¬†I feel with just a little training on how to handle the illness, more places would be open¬†to even basically helping more people with EDS or similar illnesses.

THANK YOU HAROLDS CROSS

I will stand by saying that this facility is the epitome of successful in its field, Harolds Cross, was in my experience, just excellent at what it does and offers, even for us EDS’ers.

I want to take this opportunity to thank everyone who worked with me while I was there. Everyone was professional, friendly, helpful and seemed happy in their job. You all made me feel very welcome and I felt benefit from what I learned and did while I stayed. I greatly appreciate what each and everyone of you did with your time with me!

Unfortunately I was not able to keep up with the change in pace this time but I certainly hope there will be a next time.

Thanks again.

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…and Thank YOU to all who read these mad rants about my hospital experiences!! I do greatly appreciate your time. I don’t always talk about myself (believe it or not!) ¬†I also talk about lots of different things relating to new medical research, stories from around the world as well as around Ireland, Memes and thoughts on Dysautonomia and it’s related illnesses. I also take contributions, if you would like to share anything related on the blog, please feel free to get in touch via email and if you would like to see more please follow Irish Dysautonomia on Facebook, Twitter¬†and you can find more links around the blog here ūüôā

I will update on new stuff again in the next week, have a few appointments coming up so I’ll fill you in on those, Chao for now!

Cheers, Lette

 

The Good, The Bad and The Emergency! – Part 1

*Please Find Part 2 of this post ‘HERE’

WOW!

It has been a long while, so sorry about that, so much has happened and I needed time to recover and get myself straight again before I decided to update.

Harolds Cross happened, and it was great!… while it lasted! Of course, we all know, nothing goes straight forward for me so yeah, there’s a bit of a story to go with it!
The day before I went up, I got my hair cut… It was A DISASTER! No, seriously, Look…

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Me pulling the pissiest face ever! Never go to a cheap hairdressers! Jeebus! Lesson learned!

Then on March 15th¬†I also got another new diagnosis (Neurogenic Bladder Dysfunction!)…yeay!
Lets just get straight into it shall we?

Harolds Cross –¬†Rheumatic and Musculoskeletal Disease Unit (RMDU)

I’ll start with Harold’s Cross.

I got called up there for 2 weeks at the start of February, not really knowing what to expect, I had asked for other peoples experiences of the place in some of the Facebook support groups and I got very mixed reactions. Some people loved the place and couldn’t praise it high enough, yet at the same time, there were just as many negative replies from people who didn’t find it any good for them, at all.

I made up my mind that everyone is different and I wouldn’t know how I feel about the place until I gave it a good go myself!

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Up early and ready to rock!

Up I went on the Monday morning. It was freezing hard and we had to be on the road leaving Limerick very early in order to arrive up in Dublin for 9am. We met no less than three car accidents on the way out of Limerick because of the state of the roads but thankfully it eased off passed Tipperary and then we were well on our way.

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Icy roads at sunrise

Of course, I got us lost on the way through Dublin and that was with a SatNav, I know, it takes talent to get lost using one of those but there ya go!! We did finally arrive and in I went.

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Harolds Cross is very large, with lots of different areas to cater for different medical needs, everything from inpatient palliative end of life care to week stays and day cases for varying degrees of physical disability and the individual treatments involved.

I was immediately struck by how clean and bright the place was and how very friendly the staff were. As soon as anyone saw the chair I was asked if I needed help with anything.

Once I was all signed in, I was escorted upstairs to my ward for the week, The ‘Sacred Heart’ ward and I was assigned to bed 13 under the consultant Prof. V.

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13 seems to be my lucky number! I have gotten this bed number, 4 or 5 times already during hospital stays!

 

As soon as I was in the ward I was delighted to see it was spacious and open with two separate units, the first had three beds with men in them, then through an opening in the centre of the ward you come through to a bigger area of six beds, all women and this is where I was. The ladies all introduced themselves and everyone was so friendly, I was made feel very welcome and even more delighted to know there were another two EDS patients in the unit with me! One on my ward and another in the ward upstairs.

I was assigned a wonderfully kind young nurse with an English accent and she sat down for ages with me taking all my details and full medical history, telling me everything that I will experience going forward, what will happen, what is available and where to find everything. Everything sounded great so far.

I was to meet with the consultant first, he would come to see me on the wednesday of each week. Then the Doctor and nurses would look after my needs in between. the pharmacist would review my meds, and make sure everything was up to date and OK to see if anything needed to be added or taken away etc. I would be assigned an EDS aware physiotherapist to work with my individual needs on a daily basis and an occupational therapist to cover everything else like home needs, medical aids and equipment, pain management etc. other services included Podiatry, a specialist foot care clinic that could fit you for orthotics, a social worker who gave advice on social welfare, back to work or college needs as well as a stand in as a bit of a psychologist if you needed to vent! There were relaxation classes and specialist talks on various weeks covering things like pain management and the like.

I was utterly delighted to find out that they had Therapy Dogs that come and visit the centre regularly and I was lucky enough to get to meet ‘Rian’ one day on the first week, a beautiful, great big, gentle, golden retriever that I spent time giving rubs and loves to! ūüôā
On the ward then, as well as handing out and sorting your medication, food (which was mostly fresh or freshly made that morning as well as doing what they could to cater for special diets and allergies!) and some other needs, you could also request hot or cold packs if you needed to sooth sore, achy joints and muscles. I thought that was a lovely touch to be honest and I wish it was available in all hospitals. Hot packs, for me anyway, bring another level of comfort that cant be touched by conventional medicine.

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The food, staff and facilities were really great and they did what they could to cater to special dietary needs!

They have a hydrotherapy pool also so this should have been part of my treatment while I was up there, however, they were in the middle of renovations and unfortunately a couple of weeks prior to my going up, one of the building machines ended up bursting a water pipe and put the pool out of use for the time I was there. This was a huge pity as I feel the water would have helped hugely in the exercise and also in helping the muscles to relax and recover while there, but it was not to be this time anyway!

The first day was all about settling in and finding my feet around the place, after the traveling up and all the new sights to take in, I was tired and ready to rest. The very next morning I met the consultant.

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Sleepy time in Bed 13!

He was friendly, had clearly read¬†through my file and extensive medical history and went through all that with me. He was clued in about EDS, but just generally I found. Anything he said to me, wasn’t new, it didn’t blow me out of the water by any means but he knew what needed to be done to help, he was reasonable and didn’t pretend to know more than what he did, which I appreciate in any doctor.

With his advice my treatment was about to begin properly, the doctor and pharmacist went through my medications and it was determined that, because of the issues in my gut and the fast weight loss I experienced, I was more than likely not eating enough calories most days, and on the days I was eating enough, I seemed to be not retaining the nutrients and calories and as such, continue to lose weight and energy. They tried me on a few different types of nutrient drinks to help me along and wow… they all tasted rancid! I cant have lactose or wheat so I could only chose from a handful of watery, metallic tasting ickiness!!

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Forti-yuck!

However, I was there for treatment, and I was going to give it a good go so I drank them but as I was particularly nauseous that week, a lot of what I ate and drink didn’t stay down.

The next big chunk of treatment, probably the biggest was physiotherapy. My assigned lady, lets call her, ‘A’, she was a gem! She really took her time during our first assessment together where she examined my body, all the problem areas and even finding problem areas that I didn’t even know were problem areas!!

I found her to be very good, very clued in about EDS and was extremely careful not to push the areas that caused most trouble. She understood that ‘feeling’ the muscles and joints being used was ok, but there should be no pain. ¬†She was all about increasing mobility out of the wheelchair but she never dismissed the chair and it was always there for when I needed it as of course I would need it continuously going forward. She understood that EDS isn’t curable but that exercise would help better define the weak muscles and as such they would help keep the joints tighter and better hold them in place, preventing further subluxes and dislocations. Other than that, bringing up my general fitness was another priority that would only benefit me going forward.

Once the assessment was all done, she had a printed, individualised exercise program ready for me to follow on a daily basis which included a simple warm up on a bike, starting at 2 to 3 mins with no resistance, if I could even reach that, hopefully as I continue the week, ill be able to increase that time by tiny amounts. From there I had floor exercises to follow that concentrated on my lower body problem joint and muscle areas. After these I had some standing exercises to concentrate on problem upper areas of my body, followed finally by some work on the parallel bars to help practice walking short distances, resistance band exercises and finished with a cool down, simple stretches to some areas and lastly relaxation on a physio bed with heat packs.

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My constant companion in the physio room!

 

Though I had been very ill the first week with vomiting, it had still gone amazingly well.  I arrived on the tuesday and found everything to be excellently run at the center. The staff, the food, the facilities everything had been really good and before I knew it it was friday evening and time to be coming home again for the weekend rest before going back up the following Monday morning. This was both a welcome and a tormenting touch to the whole stay.

Getting up and down from Dublin to Limerick was not easy, there were early starts, long journeys in the car which are tough with chronic illness at the best of times and no sooner you get settled back home for the weekend, you are getting ready to drag everything back up to Dublin again. Going by train wasn’t really an option, even with free travel, traveling with chronic illness is unfriendly to other passengers when I need to vomit after 20mins of vibration! Getting from the train station to Harolds cross with bag and baggage wasn’t really feasible either, needing to travel with a wheelchair and carrying crutches, other medical aids and a ton of medication wouldn’t have been easy, so driving straight there and back in our own car, at our own leisure was a more comfortable option for us.

I also found seeing my hubby so briefly for the weekend was a lovely treat in the middle of my treatment but saying goodbye again can be horribly¬†tough. I understand not everyone who is sick has a partner or ‘better half’, but I think this goes for any family members you may come home to¬†including parents, siblings, close friends, carers etc. Seeing anyone you care about¬†for such a short time and then saying goodbye to them again is never easy, no matter who you are!

I know Dublin is only ‘Up the road’ by some peoples standards but it’s still a good 3 hours travel time to and from the place and that takes a massive chunk out of your day. It¬†doesn’t make the 2 hours visiting hours seem worth it when¬†traveling up takes so long around it!
It also costs a lot on petrol so we decided to drive up and back but to leave visiting during the week as it wouldn’t be worth coming all the way up when the visiting hours are so short. Thankfully Skype made this a whole lot easier and I spent a lot of time on video chat home to himself and the pup!

As I had been very sick during the first week in Harolds Cross, vomiting almost daily down on top of the increased activity it turned out I had lost over 2 kilos after just 4 days. By the time I got home during the weekend I was in excellent spirits and couldn’t wait to get back up but I was very low on energy and spent most of the weekend sleeping to catch up on my energy reserves for the next week. This had my husband¬†slightly worried and he wondered if I should return back up at all. I decided to give it a go anyway. I wasn’t going to be given this chance lightly again so I really wanted to give it my best shot.

Back up bright and early on Monday, I was launched into everything again straight away, Physio, OT appointments, I was to meet with the pharmacist this week too as well as the foot care clinic to get fitted for Orthotics for my very flat feet, a busy week planned, I was excited for it, but I was so very tired…

I got through Monday, but the pain and nausea started to get very bad by bed time. I had been vomiting on and off throughout the day, found it very hard to eat, even to stomach taking a drink of water. The back of my lower head and upper neck were beginning to sear with pain, I had very little sleep, was extremely uncomfortable and by Tuesday morning I started getting visual auras.

The staff were excellent. I informed them of the symptoms and they kept a close eye on me throughout my stay while I was unwell but especially this day. They kept track of my hydration and food levels, taking note of what volume I had gotten sick etc. My head was terribly heavy and my stomach was very sick. All I could do for a lot of the morning and afternoon was try and sleep.

By 2pm, I felt one of the nurses touch my shoulder and gently wake me to say,

“Lette you’re due down in physio, ‘A’ wants to know if you are going to go down or leave it today? It’s entirely up to you, take a few minutes to wake up and see what you want to do.”

I had been asleep for over an hour at this stage and had been resting all morning. I woke feeling tired but not as sick as I had been so I decided I would go down and try to do a small bit at least.

When I arrived at the physio room, ‘A’¬†greeted me and I told her I had been feeling very unwell. She understood and told me to take my own time, not to push myself too much and if I needed to stop at any stage to just do so.

I started my warm up on the bike and though I had managed to increase¬†my warm up the previous week to nearly 6 mins, today I could only manage 3 minutes and it felt like the longest 3¬†mins of my life. Once this was done I had my floor exercises to do so grabbed my crutches and slowly hobbled my way over to the matted area with my printed program in my hand. Got down onto the mat to start my leg exercises and started to feel very strange. I slowly finished what needed to be done and I sat up to try and gather my head. ‘A’¬†came over and I told her I started to feel very odd. She got a chair for me and brought it over next to me. I tried to get up onto the chair and did so with massive difficulty. I felt like I was moving through treacle and my vision was begining to go black. I told her I couldnt see properly and she helped me into the chair, told me to take a quick breather and that she would be right back.

At this stage I actually couldn’t see properly at all, everything was going in and out of oily blackness alternating with swimming milky white blobs. I felt pressure build in the back of my head and push forward through my sinuses and out my ears.

I leaned forward resting my elbows on my knees, feeling a trickle of sweat tickle as it ran down my forehead, over the bridge of my nose and felt it drip off the end. Everything happened in slow motion.

The sound stopped all around me, everything now pitch black, the pressure in my head was immense, burning nausea rising in my throat which felt like it was now closing up, breathing hard, heartbeat flying…

 

heartbeat…

breath…

 

 

 

the last thing I remember was falling forward…

 

 

 

 

 

 

*Part 2 –¬†NOW HERE!

Jan 2016 Updates and Harolds Cross Rehab News!

The last time we spoke, I had said I would write back to update you on the last couple of hospital stays, latest medical related news and now I have heard back from Harold’s Cross RMDU and they want to book me in on the 8th of February so now that is also something to prepare for!

When admitted last in October, I was in for severe pain in the base of my skull and neck. With this pain I was having severe headaches that seem to come on worse just before a seizure kicked in, of which I was having many episodes prior to being admitted to hospital.

An ambulance was called because I had a strong seizure that lasted more than 10mins and over 30mins by the time the ambulance crew arrived. Though Keith told them I was allergic to Benzos, they said: “its the only way to stop her seizure now so we will give her some and watch her closely until the hospital anyway”

In the A&E I was¬†immediately taken into Resus where they got me under control, monitored me for a while then placed me in a corridor again in the main A&E area. I wasn’t there for long as I very briefly remember Keith arriving to talk to me then apparently I went into another big seizure where I was rushed back into Resus again but this time I was kept in there for longer.

They put me on a¬†phenytoin infusion to stop the Status Epilepticus¬†¬†(a seizure that lasts too long) but of course I am allergic to these medicines so I had a bad reaction to the infusion at the IV site and my arm swelled up a huge amount, my BP dropped dramatically and I started presenting with Cardiac arrhythmia’s and it had to be stopped!

Once things settled I was admitted to a ward and eventually seen by a new doctor, A Cardiologist who said he would take over my care once I explained in detail¬†that too many consultants are part of my medical set up that there is no communication between any of them. He was completely unaware of my situation himself at that time but once he realised I had in fact 3 very large old medical files (He was working off a new one that was put together only in the last 6 months and has none of my long history in it) ¬†he ordered the old files to his office so he would read over them in detail and he said he wanted to be my head consultant, if I would have him, so that he could be the ‘go between’ amongst all the consultants! I said that would be great, but I have yet to meet him outside of this admission, I have an outpatients appointment with him on the 22nd of Feb so I will be eager¬†to see how he wants to handle my care from then on. When inside I was seen by my usual Prof. Pain Specialist and he gave me Occipital Nerve blocks to help with the pain in the base of my skull and the severe headaches that go with it. These nerve blocks were a huge help numbing the pain and as a result there are less seizures with the less pain too.

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Then over the first week of December I was admitted to hospital again. This time for something completely different… I couldn’t pee, I know, I know, not pleasant to talk about but look, this is the sexy life I lead!!

So once I explained to my doctor what was happening over the phone, Low body temperature and feeling very unwell the week prior, then all of a sudden, total urine retention, ¬†he said get straight into A&E, apparently not being able to pee is serious, I hadn’t even realised so in I went and actually got seen straight away! A catheter went in, lots of questions asked to see if we could get an answer for it and all that could be found initially was it could possibly be the combination of medication I am on or the Gallbladder related severe pain and slow gut motility may have something all to do with this, we wouldn’t know until I was admitted and lots of tests had been done.

After a week of many scans, tests and some invasive procedures, I was put on what is known as Intermittent self catheterisation¬†¬†for Urine retention because of Bladder and Kidney dysfunction. I was given a lil goody bag full of things to use for it (See below, I’m all girly about the bag, innit pretty?!!) ¬†and I have to do this daily at home until I get called back by Urology to do more bladder and kidney function tests to see if I will continue this method or possibly be given a procedure to place a permanent catheter (I would really rather not have that, I don’t mind this method at all now that I am used to it!)

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My pain specialist prof. came to see me because of the Gallbladder pain I was in too and though I had been given ‘anti spasmodic’ pain killers as is recommended to help treat the Gallbladder pain, they also put me on Morphine to take very regularly at home on top of the anti spasmodic pain meds, daily, to cover all the different pain I am under on a very regular basis. I don’t like being on Morphine at all, it completely messes with you sometimes but it no doubt helps the pain, it doesn’t even take it away but helps more than anything else I have been given.

Im currently still waiting on that Urology outpatients appointment.

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While admitted in December, the Urology doctors also wanted my Gallbladder to be looked at again while I was in but my G.I. surgeon was on annual leave and I couldn’t meet him until the 5th of Jan. When I did, he was great as always, very thorough and not wanting to jump the gun with my treatment. He said to me,

“The easiest thing for the both of us would be for me to whip the bloody thing out, it would only take me about 40 minutes and you would probably be sorted. You do have sludge in the Gallbladder, but theres no guarantee that will ever turn into stones, it is dysfunctional but I don’t know with your EDS, could it cause more harm than good? given the possible healing issues and the fact that you have very slow gut motility and also losing weight, You may need that reservoir for fats going forward, even if it is faulty, so I don’t want to make too¬†hasty a decision, even if it is causing you this pain.”

What he decided to do was take my mobile number, ordered my full documentation and files to his office so he could fully study my history before making his final decision on the matter and if he doesn’t decide to take it out, he said he would at least try to do something for the Gallbladder pain as it is arresting my life at the moment and I have lost a lot of weight since this all started in December 2014. He said he would ring me before that weekend and was true to his word and called me back on Friday the 8th but only to say they couldn’t find my old files! I suggested they may be with the new Cardio who wanted to take over my care while I was in, in October, as he wanted my files too, so I passed on the details and will wait a little further to hear back on that.

In the meantime, I have also heard back from Harold’s Cross RMDU. It had initially been suggested by Prof. Rodney Grahame in London that I get referred there as it could be great to try and get me out of the wheelchair full time but even though I was told in December 2014 that I had been referred up, I had heard nothing back all year. I only found out last week that they had my referral all along and that they wanted to admit me in May 2015 (Last year!) but due to a mixup I never got the appointment.

Mistakes can happen and it is sorted now, they want to admit me on the 8th of February for my first weeks trial where I will get intensive, Physiotherapy, Hydrotherapy, Occupational therapy and daily pain management techniques to help me live long term with my illness and hopefully get me more mobile, all the while being under constant nurses and a consultant rheumatologists supervision incase health things go south and they can refer me to a local hospital if that happens.

They will admit me for a week, Monday to friday and I will be sent home the weekend and brought back in again the following week if it is deemed necessary to continue the treatment. I have heard lots of reviews, many mixed but mostly positive, so I am interested to see how it will go for me, of course, I will report fully on how it goes and if I found it beneficial and suitable ūüôā

Until then my next 2 appointments are on next Monday the 18th of Jan for a Pots Clinic check up and then on the 28th with the Prof. Pain Specialist who will give me some Greater Occipital Nerve Blocks (into the base of my skull/top of my neck) and Sacroiliac joint and hip Steroid injections.

It’s all go until Harold’s Cross kicks off and I hope to have a couple of blogposts up before I go up, so keep your eyes peeled and as always, THANK YOU so much for taking the time to read ūüôā

Lette (Fainting Goat)

This time I ended up in the ICU!

It has been a crazy month, to say the least! A lot has happened, so this is going to be a long one, bear with me, I do these posts to refresh my own memory of everything that goes on too. There is a ‘too long didnt read” at the bottom of this for those of you who don’t want the nitty gritty, This post will include pictures and a short video clip of one of my seizures, so lets go…

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Just after I woke up in resus!!

Once again, on the 15th of July, I ended up having a Nurocardiogenic syncope at home followed by a prolonged seizure that required me to be sedated, intubated and rushed to Accident and Emergency via ambulance.

I was in resus until my breathing and everything was stable enough for me to be admitted, where then I waited on a trolly in A&E for 34 hours before being given a bed on a ward. 36 hours is the cut off point where a patient HAS to be given a bed, where I presume legal action can be pursued after this point, I don’t know to be honest.

After being admitted into the ER, waiting for a ward bed.

After being admitted into the ER, waiting for a ward bed.

It was 3am in the morning, I had been waiting around drunkards and violent drugged up assholes who had nothing better to be doing than shouting abuse and pulling off their bloody bandages where I could see where they had split their own heads open by falling backwards onto a kerb, probably falling only over their own feet or after starting some fight over something trivial. Either way I was finally given a bed on a ward, in a single room for the night where I really needed to catch up on some much needed sleep!

The following morning I was moved into a 4 bed ward nextdoor where it was quiet, lovely and peaceful, unlike the usual geriatric ward I normally end up on when I go into hospital. Here I caught up on sleep got a little better over a few days, then had another few seizures. Everytime I got medicated for the seizures they seemed to get worse, to the point where one day I had a seizure that made me end up in the HDU (High Dependency Unit)

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Epileptic Seizures are usually treated with drugs called Benzodiazepine’s or Benzos for short. Given in high doses they can cause respiratory depression and can stop breathing to a point where you may need to be ventilated. This happened to me and that’s why I ended up in the HDU so that I could be watched closely by nurses more ready and able to treat me faster than those on the ward. I was only there for a few days until a bed became available on another ward. The geriatric ward I hated so much!

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So, down I went, into the geriatric ward. I was so out of my mind on all sorts of sedative drugs, I don’t know how long I was on that ward before I had another seizure, this time a really serious one. Luckily as it happened, the head Neurologist happened to be in the ward at the time speaking with another patient so he came over and saw the whole thing happen. Over the course of 2 hours and 40 minutes I continued to seize and as usual they treated me with a huge amount of Benzos to try and stop it, but as usual, I seemed to resist, things became worse and I had to have my airway ventilated to the point where they decided to move me to the ICU (Intensive Care Unit) as the seizure was so severe and I wasn’t coming around from it and they thought I may need to be ventilated for a further period of time or may need to be given even more serious drugs to help me wake up.

My Husband had been called in as this had obviously gotten serious, he had been called in a few times at this point because of prolonged seizures but even he was surprised to hear about me going to ICU. Keith has been amazingly supportive throughout and is always by my side for everything, I can never thank him enough for his love and support. He called my mum and they both rushed in to be with me.

Thankfully though, I did eventually come around on my own, stoned and confused, I thought I had woken on the Starship Enterprise or something, ICU, I have to say, from a Techy point of view, looked totally cool!!

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I hadn’t a clue where I was, I tried to lift my head to get a better view of my surroundings but the room spun, all I could see was, there was glass everywhere, amazing looking machines and monitors, all connected to the ceiling, giant robotic looking arms and tables with instruments beeping and clicking, where the hell was I? I almost immediately fell back into a sleep of utter stupor from the drugs they had filled me with until I heard a ladies voice…

“Hey you, welcome back to us, we got worried about you there for a while… You are in the ICU, my name is Dr. …”

The ICU?!! being told that even in a drugged up state was quite a bit to take in, she explained what had happened and that they were going to keep me there until they were confident that I was safe enough to be returned to the HDU (High Dependency Unit)

Keith and mum arrived in and it was nice to be awake for them, even if I was still stoned out of my noggin, I slowly came around properly and thankfully there was nothing cognitively impaired from what we could all tell. My heart rate dropped so low at times it set the monitors off a few times but my stats got eventually better, I was allowed to eat a little and have a wash before being returned to the HDU.

In the HDU, I didn’t recover very quickly, I was feeling terrible, slept a lot and refused to eat for a few days as I was so nauseous which in turn made my symptoms worse, my blood sugar dropped very low to the point where my nurse begged me to eat and drink something. I tried and things slowly improved.

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While in the HDU I had to endure feeling sad about having to miss the benefit gig, but I got a massive surprise one day when Keith arrived into me at visiting hours and said, “Someone is here to see you” … when they popped their head around the curtain it took me a minute to register as it was such a surprise, a dear friend came to visit me, all the way from America, just for one night to be at the benefit gig, she is a pilot so she has the freedom to jump a plane where she can and hitch a ride wherever, I couldn’t believe it, we embraced eachother, it was so cool, what an incredible gesture, one I don’t even know where to begin on how to thank her!!

I was in the HDU for 5 days and because the Neurologist on the ward originally saw the bad seizure, he fast tracked a bed for me in Beaumont Hospitals, EMU (Epilepsy Monitoring Unit) in Dublin, for an investigative Video EEG to find out are these seizures Epileptic with electrical activity in the brain or not and caused by something else.

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I was transferred to Beaumont via ambulance where I stayed for 3 days under constant monitoring, 2 cameras, a ton of electrodes glued to my head and 2 seizures later I was seen by their Neurologist.

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The seizures showed no sign of electrical activity in the brain at all so I was delighted to hear that he was confident enough to say I didn’t have Epilepsy, excellent, so, what was causing my seizures?

He said it was one of 3 things, 1 or 3 being the most likely:

1: They could be a symptom of the POTS or EDS, like Dysautonomic Seizures, but as that was not his field, he was unqualified to say and it would be best to speak to Prof. Grahame, whom I will be meeting in 10 days time in London.

2: It was purely psychological, which he wasn’t willing to believe as the seizures were very real and I was most certainly unresponsive with erratic stats during those episodes and have no evidence of past traumas or psychological problems.

3: Which he said was the most likely cause, was that the first seizure I had back in May that started all this may have been a complete once off and that the drugs and Benzos they treated me with and prescribed me with actually exacerbated all my symptoms, didn’t suit me at all and made everything far worse, so he was immediately going to cease all antiepileptics I was on. Which was outstanding news because since May all I have been doing on the new drugs was sleeping and not progressing at all.

Once that was settled, he wrote up his observations for my team of Limerick doctors and on the 3rd day I was returned back down to Limerick via ambulance and was put back into the geriatric ward where it was quite literally like a crazy house in comparison to Beaumont where everything seemed to run so smoothly by comparison!

A night goes by on the ward, old people moaning, crying out, the smell of poop and vomit… I needed out and fast, but I did notice one thing. Other than tremoring a little from coming down off the amount of Benzos they gave me, I hadn’t had a single seizure since they took me off the antiepileptics!! That was 3 days seizure free! I was feeling a little brighter and not a sniff of a seizure type headache, I was delighted and as it was the Friday prior to the long August weekend, I felt I didn’t need to be sitting, wasting a bed on the ward until the following Tuesday and I was eager to get home to Keith and the pup, it had been nearly 3 weeks in at this stage.

My medical team came to see me, asked me about how Dublin went, go through my charts, recognize that I am to be removed completely from all antiepileptics and if I am to have another seizure I am not to be given Benzos as they simply make matters worse. They will monitor my progress off the drugs until they see me next time and see how I do.

As part of their diagnostics and to rule absolutely everything out they want me to speak to a¬†Neuropsych anyway just cover all angles, which I have no problem doing, we are all pretty confident I am sound, it is just another diagnostic. They completely recognize the fact that it could have been a once off dysautonomic seizure that was treated with medication that didn’t suit me.

Considering I have been out of hospital 15 days now and not a single seizure in sight, I am pretty delighted that is most likely the case. I am brighter, healthier, need less naps and have less symptoms in general since coming off the antiepileptics, that in itself is a wonderful outcome.

All that is left to do now is meet Prof. Grahame in 10 days time in London and hopefully he may be able to shed even more light on my prognosis.

Too Long Didn’t Read?
Had severe seizures, ended up back in hospital, longest seizure 2 hours 40mins which landed me in the ICU, was transferred to Dublin for tests which confirmed I didn’t have Epilepsy, turns out the first seizure may have been a once off dysautonomic seizure and it was the antiepileptic drugs they had me on that made matters worse, off them now and not a seizure since, WOO!!! 10 days till my trip to London to see Prof. Rodney Grahame.

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