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 : email@example.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 🙂
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.
…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!!
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…
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.
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!
My medical chart is HUGE!!
This kinda hurt, in fairness!
This? not so much!
Trying to keep the bright side out!
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 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.
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:
Are completely or almost completely without the use of both legs or
Are completely without the use of one of your legs and almost completely without the use of the other leg to the extent that you are severely restricted as regards movement in your legs or
Are without both hands or both arms or
Are without one or both legs or
Are completely or almost completely without the use of both hands or arms and completely or almost completely without the use of one leg or
Have the medical condition of dwarfism and serious difficulties of movement of the legs
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.
You need to send the following documents to the Central Repayments Office
The original Primary Medical Certificate if you are claiming for the first time. You must apply to your Health Service Executive (HSE) Area for an application form for a Primary Medical Certificate – obtain an application form from yourLocal Health Office in the HSE. Complete the application form and return it to the Senior Medical Officer of the Local Health Office. The Senior Medical Officer then appoints a HSE doctor to visit your home and carry out an assessment of the level of your disability. If you satisfy the requirements, you are granted a Primary Medical Certificate by the HSE.
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
An original invoice from the dealer showing the full purchase particulars of the vehicle and verifying that payment of the amount due has been made in full
An original invoice from the person who adapted the vehicle, showing that payment has been made in full. The invoice must show full details of the adaptations to the vehicle and the VAT charged.
From 29 April 2012 a new vehicle that is adapted requires an Individual Vehicle Approval (IVA) certificate from the National Standards Authority of Ireland (NSAI)
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.
Applying for repayment of VRT and VAT
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.
A fully completed Application Form DD1
The original Primary Medical Certificate if you are claiming for the first time.
An original invoice from the dealer showing the full purchase particulars of the vehicle and VAT charged and showing that payment of the amount due has been made in full
An original invoice from the person who adapted the vehicle, indicating that payment has been made in full. This invoice should set out the full details of the adaptations and the VAT charged.
The vehicle’s Vehicle Registration Certificate.
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.
Applying for refund of excise duty on fuel
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.
Applying for exemption from motor tax
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.
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 🙂
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.