New Look for 2015, Looking for Guest Posters!

Hey all,

I was thinking about sprucing up this little blog and related social media for 2015, Perhaps a new look, guest posts, any suggestions welcome of what you would like to see featured, please let me know here or at : irishpotsies@gmail.com

As always, if anyone wants to write a post, draw a picture, do a presentation, a video, whatever you please on any aspect of Dysautonomia and it’s related issues, please just get in touch I would be delighted to post it here on the blog 🙂

Thank you all 🙂
/Lette

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Heading back to London

Or at least that’s the plan!

I have my email sent for a new appointment to see Professor Qasim Aziz over in the Hypermobility Unit at the Hospital of St. Johns and St. Elizabeth. He is a Neuro Gastroenterologist who works alongside Prof Grahame, whom I have already seen. I’v been told by both Gastros I have seen on the 23rd of this month that going back to London is recommended as the best next course of action, to see specialists knowledgeable in conditions related to EDS.

So I have opened the fund again as this is the only way it is possible for me to get treatment abroad at the moment.

Even if you could share this link ( gofund.me/LetteEDS ), I would greatly appreciate any help and support, thank you and as always I will keep you updated with posts on how everything is going.

Thank you all once again.

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I Was In Hospital yet again!

…but this time it wasn’t directly because of Dysautonomia, but kindof because of the EDS!

I ended up back in hospital 4 weeks ago because of serious pain in the area of my Gallbladder. I had been nursing a nagging in my gallbladder area for a few days prior then out of the blue, a faint and I woke to excruciating pain in my right hand side, up near my ribs. Ambulance called and I was carted to Hospital once again with suspected Gallbladder trouble.

It wasn’t long before I was admitted to the surgical ward under a new surgical doctor and his team who were excellent, their enthusiasm was like nothing I had been used to with my usual team of doctors.  The doctors suspected Gall stones or something to indicate the gallbladder was in trouble. A lot of tests later and it turned out luckily for me that there were no Gallstones but one test did show I had Gallbladder and gut Dysmotility meaning it was not emptying or behaving as it should and this was causing the pain, discomfort and other problems in my gut too.

I was very sick, uncomfortable and in a lot of pain, even though they treated me with strong pain killers and continued some tests. I was then free to go home the Friday of that week.

While at home I was still very unwell and everything I ate hurt me and made me feel worse until that Sunday night, I became very unwell after dinner, vomited and the pain in my side erupted, ten fold! I cant even begin to describe the pain I thought I had been skewered! This continued long enough for Keith to ring an ambulance again.

When the Ambulance crew came they transferred me into the back and called the hospital to fill them in of my condition saying my pain was 10 out of 10, that was no lie, I never felt anything like that before!

One of the guys started to worry about my Blood pressure as it was reading only 80/40 (Normal reading is 120/80) and he was concerned encase I may faint and go into respiratory arrest as I usually do when I pass out. The pain was terrible but they called an advanced paramedic to meet us half way to the hospital and he could administer Morphine until I got to Resus in the Hospital.

I arrived in Resus, blood pressure very low, pain and heart rate very high, they started attaching wires and sensors while I groaned on the bed. This ended up being a very long night, my body started giving out and acting up to the point where a catheter needed to be attached as certain systems in my body had decided not to cooperate because of the strength of the pain meds I was on.

More tests, A very long waiting time in an extremely busy A&E and I was finally admitted to a bed on a ward upstairs.

Long story even longer, I ended up staying in the hospital another 2 weeks, making my overall stay with this thing just over 3 weeks. I had some xrays, other tests and Gut Transit studies done during my stay, these showed that my gut was in worse shape than they originally thought. It has severe dysmotility, most likely all caused by the EDS and Collagen problems in the gut. It is treatable but there is no guarantee it wont continue to get worse on its own.

Going forward my Doctor mentioned I would have to use certain medications to help with the gut transit issues and I have the be extremely careful with what and how I eat as my gut is in danger of dying altogether now that it has gotten to this stage, so I have to treat it like a baby! He mentioned following the Low Fodmap Diet as a matter of necessity not of choice. He also supported me going to the UK for treatment, he agreed that there are no specialists here that are knowledgeable in EDS and its related complications and he was kind enough to ask the ward nurse to look into any financial options that would be covered by the HSE. Unfortunately I heard nothing back on this but it was the first time a doctor acknowledged the need for treatment abroad. I will be making an appointment to see Prof Aziz in London in the new year.

So after getting this info along with a long list of prescriptions, he said I was free to go and he would refer me to his outpatients clinic for the new year to follow up on how I am doing. He also said he wanted me to see a specialist Gastroenterologist and I got an appointment just today, to meet him tomorrow morning, so I will be interested to hear what he has to say. The same doctor has a personal interest in EDS.

I will update tomorrow on how the appointment with the GI specialist goes, hopefully it is all good and helpful news going forward. I hope 2015 is less on the hospital visits than this year has been!!

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UPDATE: 23/12/14

I went and had the appointment with the new Gastro  Doctor in Nenagh General Hospital and he has put me on a new drug to stimulate my gut function, other than that there is no new news 🙂

Dog Saves Owner From Fainting; Super Puppies Can Smell Blood Pressure Drop

Vanos Excel G3 Light Wheelchair Review

Here is the latest video update over on the Irish Dysautonomia Awareness Youtube Channel, I hope you enjoy 🙂

 

Irish Dysautonomia Awareness Youtube Channel Update

The latest update over on the Irish Dysautonomia Awareness Youtube Channel, I hope you enjoy! Please share and subscribe, thank you 🙂

 

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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