Here is the latest video update over on the Irish Dysautonomia Awareness Youtube Channel, I hope you enjoy :)
Here is the latest video update over on the Irish Dysautonomia Awareness Youtube Channel, I hope you enjoy :)
The latest update over on the Irish Dysautonomia Awareness Youtube Channel, I hope you enjoy! Please share and subscribe, thank you :)
We were off to see the wizard, the wonderful wizard of… The Hospital of St. Johns and St. Elizabeth, in St. Johns Wood in London, Professor Rodney Grahame. Specialist Rheumatologist.
I had never been to England before so I was looking forward to the trip. After Landing, we caught the express train into the city where we could drop our things into the hotel, grab some food and gently meander around the locality. Though that didn’t last long, I was wrecked!
Considering I got no sleep the night before and had to be up at 5am to check into the airport I had to come back to the hotel for a while and take a nap before we were to meet with some friends for dinner that evening, the day had already caught up with me but the nap did me well and I went out and about where our friends showed us around some of the city (In the milling rain!) and took us out to dinner.
It was the following day we were to meet the wizard and after a long and busy first day, we slept hard that night!
So, Up on the Tuesday, we strolled down to St. Pancras and Kings Cross Station where we grabbed a bite to eat and went for a walk afterwards to kill some time before the appointment. The time came and we took a Taxi to the hospital.
Accessibility in London sucks… like really badly sucks, the Taxis and most busses are equipped to take individuals in wheelchairs but the city itself, the pavements are damaged and rough, few ramps, dangerous roads, unreliable traffic lights and most shops, cafes and places in general were stepped without lifts or alternatives for wheelies. The majority of the underground Tube stations were not accessible and Also, I hate to say it, but most people on the streets don’t care if you are in a chair or not, they will walk straight through you, in most cases. For such a big city it (Accessibility wise) was a bit of a disappointment.
I wasn’t sure of what to expect when I got to the hospital, but I wasn’t expecting what greeted us. A modern, beautiful building, all level access for chairs, open and bright and it even had a concierge beside reception, A CONCIERGE!! Seriously, inside the door ready to help! :D I was highly amused by that!!
ANYWAY!! Up to the 2nd floor we went where I checked in and was told wait in the waiting room. Before ten minutes passed, a door opened at the far end of the waiting room, and there stood a tiny, slightly frail looking man wearing a classy suit and a smile, It was the wizard, He called me in!
Prof. Rodney Graham welcomed Keith and I into his office where he did everything to make sure we were comfortable, even asking if the air conditioning was ok!!
I have to say he made an immediate impact as being a gentleman. I was only supposed to be booked in with him for an hour, he saw me for at least 1 hour 45 minutes.
He started by listening to my full medical, family and symptom history, taking notes as I spoke, stopping me briefly as I went to ask questions and clarify some things. He then went on to ask me a list of questions relating to family, symptoms, hospital visits, all my broken bones and injuries, asked about my pots and Gastro intestinal issues, everything! Then a physical exam where he measured my arm length, measured the curvature of my spine, did the Beighton Scale on me (The Beighton score is a simple system to quantify joint laxity and hypermobility) Checked each of my joints separately for hypermobility. Checked the elasticity of my skin, the blue in the whites of my eyes, checked my flat feet, the inside of my mouth for a high pallet and overcrowding, asking about anesthetic resistance which I have had at the dentist many times before. He asked me about cuts, bruises, bleeding, checked my blood pressure, height…
He went out of his way for a full hour and a half to rule out EDS of any type, then sat me down in front of him again, looked at me and said:
“You came here knowing what you had, you do know what you have, don’t you?”
“I think so, but I need to hear it from you, Professor!”
He fully confirmed a diagnosis of EDS type 3 Hypermobility type, with gastro issues. Explaining to me in full how this is not a benign condition and that it needs treatment. He said he would write to each of my doctors and to me with a confirmed diagnosis, a full treatment plan and a recommendation for me to be referred to both a gastroenterologist and to Harolds Cross in Dublin for intensive physiotherapy and rehabilitation to get me back on my feet.
He said we would wait and see how the Irish doctors and the HSE reacts to his letters and if nothing happens fast enough in the next few months he will recommend for me to come back over to his team for me to see Prof. Aziz (Neuro Gastroenterologist) and Prof. Mathias (Autonomic and Neurovascular specialist) for faster, although private treatment.
I also asked about the seizures and if Dysautonomia could cause them. He said he was not a neurologist but that people with EDS and Pots have had Non Epileptic seizures before, but he did not know if the seizures were caused by dysautonomia or something else, but that it has happened. He also agreed that it was most likely the medication that they were giving me to ‘treat’ the seizures, in fact, made it worse, giving that now I have stopped being prescribed these meds, I have had no more seizures.
I was delighted, It was so worth the money to fly over and meet him, even for the confirmed diagnosis itself. I haven’t received the letters as of yet but as soon as I do, I can presume my doctors will have gotten them too… I am very curious as to how they will react to what he has to say. Prof. Grahame is considered one of the worlds best Autonomic specialists, I would hope they listen to what he has to recommend for me and that treatment can finally get a proper run for its money! I would really love a chance at Harolds Cross for Rehabilitation. Anything to help me back on my feet again :)
We had one more day in London before flying home, we booked an extra day not knowing if Prof. Grahame would send me for some diagnostic tests or not but we had the day to ourselves.
A dear Irish friend of ours, now living in Stoke On Trent came down to London to meet up, it was the first time seeing her since Christmas and it was brilliant to catch up. We decided to go to the Natural History Museum to see the Dinosaurs and because it is free in! It was amazing! After a short wait in the queue to get in, the museum itself was fantastic. Not entirely accessible though, just be aware if you go there, not all areas can be accessed by wheelchairs but overall it is still definitely worth going to see and ended up being one of the highlights of the trip overall :) Unfortunately we arrived on one of the last days that kids were off school, so the place was packed and the queue for the dinosaur area stretched the entire way across the museum, it would have taken well over an hour to get in and we decided not to wait, either way there was plenty for us to see, check out the photos I snapped on the phone! :)
After being about three hours at the National History Museum, we decided to head to Covent Garden where I picked up some pressies for the family and we caught a bite to eat, walked around for a bit and took in the sights and sounds before getting our friend back to Euston Station for her train back to Stoke on Trent, we said our goodbyes and Keith and I headed back to the hotel room, started to pack and prepare for the flight home the next day, then fell into bed.
The following morning we grabbed some breakfast and headed out to Heathrow, before long we were back on the plane home and it was all over. If I am to head back over which may very well be a possibility very soon, I will only stay for 1 or 2 nights as opposed to 3. London is expensive and you easily notice the extra day on your pocket just with eating and getting taxis alone But we didn’t know what to expect from our first trip and it was well worth going over to meet the man. I couldn’t have done it without the Medical Fund, and hopefully now treatment will get underway properly without any more doubts from the HSE.
My next appointment is on the 15th so I am interested to see how that goes and of course ill fill you in, so that is all for now, will leave you with some other shots from walking around London! Toodle pips! :) :) :)
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…
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.
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)
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!
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!!
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.
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.
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.
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.
You can support Lette directly Here! Thank you :)
How awkward does something have to be? when it comes to the social welfare they don’t make it easy, that’s for sure.
We have done just about everything we have needed to do since I have become disabled, in order to settle into the new lifestyle that we have been forced into. However this Drivers and Passengers with Disabilities scheme, is the biggest ‘scheme’ I have ever come across!
For nearly a year now we have been ringing Monaghan (the office where they rule all the roost with regards to this and other disabilities schemes) and we have been told time and again how to get on the scheme, but each time the story has changed ever so slightly and we have been left confused. Now we have been told that our car, which was inherited through the family, is not allowed on the scheme as we are not the ‘original’ owners who purchased the car, even though the car was purchased by us from the rest of the family! Cars of inheritance or gifts are simply not allowed on the scheme. No explanation, just cause!
Long story short we will need to change our car, trade it in against a car of equal worth with a modification in order to be on this scheme. That is just bothersome for the sake of it!
I do have a Primary Medical Certificate which should make this process straight forward, but, as you can see below in the information, it is complicated and unnecessary and it means we have to trade our car, which is something we don’t want to have to do nor have the money for, so unless it is a straight swap for something, we won’t be doing it :/
Another thing is we will have to modify the car in order to be on the scheme, this modification has to be 10% of the cost of the car. This part pisses me off because I know people who have gotten brand new cars in the last 2 years and only got a steering knob put on the car, at the cost of about €20, this 10% thing is only recent meaning those who have already availed of the minimum modification requirement can carry it over on to their new cars without the 10% modification needing to be done to their car, but for us new applicants, we have to pay the full penance! and also the Mobility allowance is now gone, with absolutely no replacement, so there is no help at all for people like us who want to get on the scheme.
It is just not fair.
Here is how the scheme works:
- All information taken from Citizens Information site – 28th June 2014 -
The Disabled Drivers and Disabled Passengers Scheme provides a range of tax reliefs linked to the purchase and use of vehicles by disabled drivers and disabled passengers in Ireland. The rules of the scheme are set out in the Disabled Drivers and Disabled Passengers (Tax Concessions) Regulations 1994 (SI No. 353/1994) as amended. Under the terms of the scheme, you can claim remission or repayment of vehicle registration tax (VRT), repayment of value-added tax (VAT) on the purchase of a vehicle and repayment of VAT on the cost of adapting a vehicle, up to a maximum of €9,525 for a disabled driver and €15,875 for a disabled passenger.
Relief is limited to a vehicle that has been specially constructed or adapted for use by a disabled person and that has an engine size of less than 2,000cc in the case of the driver and 4,000cc in the case of the passenger.
If you qualify for tax relief under the scheme, you can also claim repayment of excise duty on fuel used in your vehicle for the transport of a disabled person, up to a maximum of 600 gallons per year. In addition, if you qualify under the scheme, your vehicle may be exempt from the payment of annual road tax on application to a Motor Tax Office.
Vehicles adapted for disabled drivers or passengers are entitled to exemption from toll road fees. Toll road operators issue special passes which are recognised by all other toll road operators and which allow such vehicles pass through the tolls without paying. To obtain a special pass apply to your nearest toll road operator (pdf).
In order to qualify for tax relief under the scheme, you must have a valid Primary Medical Certificate. A Primary Medical Certificate confirms you are severely and permanently disabled and:
Local Health Offices of the Health Service Executive (HSE) process applications for a Primary Medical Certificate. If the HSE refuses your application for a Primary Medical Certificate, you may appeal the refusal to the Disabled Drivers Medical Board of Appeal, National Rehabilitation Hospital, Rochestown Avenue, Dun Laoghaire, Co. Dublin.
Download and complete Form DD1 (pdf). This application form is also available from the Central Repayments Office.
You need to send the following documents to the Central Repayments Office
If your application for remission of VRT is acceptable, you will be sent a Letter of Authorisation which authorises you to purchase a vehicle. When you have chosen the vehicle, the vehicle identification number (VIN) must be submitted to the Central Repayments Office on the form issued to you with the Letter of Authorisation. You will be issued with an Exemption Notification that allows the vehicle to be registered exempt of VRT at the NCTS centre.
When you have bought the vehicle, you must obtain the following documents
To register the vehicle at the NCTS centre the dealer must submit these documents, along with the Letter of Authorisation, the Exemption Notification and the completed Form DD1. If the documentation is in order, the NCTS will register the vehicle without charging VRT.
When the vehicle is registered, to obtain a repayment of the VAT the dealer should submit the Letter of Authorisation, the Exemption Notification and the invoices mentioned above to the Central Repayments Office.
If VRT has not been remitted and you want to claim repayment of VRT and VAT, you need to submit the following documents to the Central Repayments Office.
If the vehicle has been registered before, there is no need to go through the usual change of ownership procedure as this will automatically happen when the vehicle is taxed exempt at the Motor Tax Office.
If your claim is accepted you are issued with a Certificate of Approval by the Central Repayments Office which you should submit to your local Motor Tax Office. You will be issued with a new Vehicle Registration Certificate which you should send to the Central Repayments Office where it will be endorsed to the effect that the vehicle was purchased under the Disabled Drivers and Passengers Scheme and cannot be disposed of for two years. This certificate will be returned to you immediately.
If the vehicle has previously qualified for tax relief under the scheme, the maximum amount of tax relief that can be claimed for the vehicle will probably have already been claimed. However, you should still submit form DD1 with all the required documentation as listed above.
Claims for repayment of excise duty on fuel should be made once a year on Form DD3 (pdf) which will be automatically sent to you by the Central Repayments Office.
You need to keep receipts for the fuel purchased for two years, but do not have to submit them with your claim. You have to estimate the percentage of that fuel that is used for your own transport or the transport of a disabled passenger.
If your vehicle is being registered in Ireland for the first time, you need to present your Vehicle Registration Certificate to your local Motor Taxation Office.
If your vehicle was previously registered in Ireland before you entered the scheme, you will be given a Certificate of Approval by the Central Repayments Office, which you should present at your Motor Taxation Office.
You can find further information on the tax relief scheme (pdf) on the Revenue Commissioners’ website
Office of the Revenue Commissioners
M: TEK II Building
Just a quick update to let you all know that due to a hormone level increase in one area and some bizarre symptoms, the doctors had been worried about a pituitary adenoma in the brain. An MRI, paid for by the fund has been completed to rule out the possible Pituitary adenoma, and I am delighted to say, other than obvious signs of a history of bad ear trouble in my mastoid bones, it came out all clear. Thank you once again for your support, this test goes towards one of the tests I needed to have completed for my first trip to London in August :)
The first appointment with Prof. Rodney Graham at the Hypermobility unit in The Hospital of St. John and St. Elizabeth has been booked for the 26th of August and flights and accommodation have been purchased, again with thanks and help from the Go Fund Me fund, so I am all ready for the first trip over and I am looking forward to it now. I hope he can shed some light on things and my health can start to improve if at all possible.
Another treatment I have had in the mean time, this one just through the medical card, was steroid injections into my sacroiliac joint and right hip in Croom Hospital under Prof. Harmon. They hurt, I wont lie, but I have to say, after a few days of initial soreness from the injection sights, I have found an improvement in the pain. I hope with a continuation of these pain killing injections and the trip to London it may start me in the right direction to get my ass out of this wheelchair, but I won’t jump the gun just yet. The best things happen slow and steady.
All I can do for now is continue to hope and do my daily physio! :)
Thank you once again to everyone who has contributed and helped with the Go Fund Me campaign, I am overwhelmed with the level of support I have received so far. I cant thank you all enough.
Thanks also to Mark Griffin and Richard Lynch or organising a benefit Quiz night in Dolans Limerick on Thursday the 24th of July at 8pm, all welcome and all information on this event may be found HERE.