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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Quiz Nite in Aid of The Fund

Please click on the poster for more information.

Please click on the poster for more information.

 You can support Lette directly Here! Thank you :)

Drivers and Passangers With Disabilities Tax Relief Scheme

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 -

Tax relief for disabled drivers and disabled passengers:

Information

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).

 

Rules

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.

 

How to apply

Download and complete Form DD1 (pdf). This application form is also available from the Central Repayments Office.

 

Applying for remission of VRT

You need to send the following documents to the Central Repayments Office

  • Form DD1
  • 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 your Local 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.

 

Where To Apply

You can find further information on the tax relief scheme (pdf) on the Revenue Commissioners’ website

 

Central Repayments Office

Office of the Revenue Commissioners
M: TEK II Building

Armagh Road
Monaghan
Ireland

Tel:+353 (0)47 62100
Locall:1890 606061
Homepage: http://www.revenue.ie
Email: cromon@revenue.ie

____________________________________________________________________________
 

 

 

MRI, Pain Injections and London Update

Lette in the 1.5 Tesla MRI

Lette in the 1.5 Tesla MRI

Hi folks,

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.

 

This time in Hospital, Seizures!

It was Friday morning and all through the house, not a creature was stirring… except for my husband, Keith and my sister, Jessica frantically calling out my name trying to wake me out of a syncope that had just happened after I got onto the floor to play with our pup Boo who now found herself up on my chest trying to worriedly figure out what the hell was happening to her mom.

There is a video, but I wont traumatise you… unless you want to that is, if so, let me know and I will share the video of my husband giving me rescue breaths while I fail to breath while out cold. It’s not a pretty site, I assure you.

I hadn’t come too, Keith called an ambulance and continued to give me rescue breaths for a further 17 minutes until they arrived.

All hell broke loose on the landing of the stairs while they proded and poked me with IV lines, Blood Pressure monitors, temperature readings and heart rate monitors and as I wasn’t breathing very well they decided to intubate me into my nose which immediately sent me into a full blown seizure, just to add to the mix for good measure!

This is what I am told of the day, as of the moment I passed out on the landing while petting Boo, I don’t recall a single sausage!

I was rushed to hospital in a state of Status Epilepticus while they tried to stabilise me and filled me full of every sedative probably known to man while I promptly and apparently completely ignored them and kept up the shake and vac, just to spite them!

Keith bagged up everything I needed, along with Jessica and Boo into the car, dropped them at my parents house and rushed into the hospital to be with me where I was in re-suss continuing to seize, even while doped up to the eyeballs and completely out of it.

A CT and full set of bloods was ordered and subsequently came back clear, yet I was still seizing and in and out of consciousness and while conscious, I apparantly kept looking around myself in utter awe and repeatedly asked, “Where is this place?!”… What an idiot, LOL! but in my own defense I was completely wrecked at the time and on all manner of wonderful drugs!

I was in the hospital for roughly 13hours before I started to make any manner of mental sense. This had them worried in that all day I was acting completely confused and not at all myself. They hadn’t been sure up to this point whether it was the drugs or if I had very seriously suffered some sort of oxygen deprivation to the brain.

Eventually I started to come round, still a little confused but as Keith explained everything that had happened, it was like all emotion suddenly connected with his words and I started to cry, a little in confusion and a little in the guilt I felt in all the bother I had caused everyone, especially Keith and my family. A completely irrational feeling but I couldn’t help it.

They admitted me and Keith decided to head home for a rest. The next day, Saturday, I don’t remember much of either as I mostly slept and puked and had a few more seizures, just to keep them on their toes!

Sunday is the first day I truly remember and I felt absolutely dreadful. My muscles were stiff and sore from seizing and I kept getting ill because of all the medication in my system and I had one hell of a headache and very low blood pressure.

I was in hospital after this for 2 weeks where I recieved just one more diagnostic test in all that time, an EEG. They were testing me for Epilepsy.

The EEG came back clear also but the Neurologist (now my newest addition to my team of doctors) informed me that he had seen people with epilepsy going through years of EEG’s before being able to catch the electrical activity in the brain so that they were going to start treating me for it anyway, and would continue testing as an outpatient, as I was continuing to have seizures and signs of the condition, like waking up with bites on the inside of my cheek and blood on my pillow. He said I had all the hallmark signs of it and so he started me on the new drug Keppra and sent me home on exactly the 14th day of my stay in hospital. I was delighted to be going home.

He told me to prepare for tiredness but boy, that was an understatement! The addition of this drug to the rest of my medications make my total daily tablet intake number 22 and has completely knocked me for six. The quality of my life is currently down due to the amount I need to rest and how ill I feel, especially after a seizure but hopefully once I get used to the new med in my system, I will be back on the right direction again.

The Keppra seems to be working also, any seizures I have had since coming home have been very mild and nowhere near as intense as they had been while I was in the hospital which is surely a good thing.

So now as well as Dysautonomia, Pots and EDS, I am now being treated for Epilepsy too.

I tell you one thing, I have an extreme new found respect for anyone who has lifelong Epilepsy, seizures really knock the crap out of you!

So where I stand am, now is that I have a lot of tests left to do, as an outpatient. Why they couldn’t do these as an inpatient ever yet boggles the mind, but there you have it. My hormones are so out of whack I may infact have a pituitary gland adenoma but no MRI was requested… this will be done as an out patient, if needed.

I have to have more EEG’s done as well as some Video EEG’s but they dont do them in Limerick, instead I will have to wait to be called to Cork or Galway, again as an outpatient.
Bloods, as an outpatient,

Urine, as an outpatient,

Life, The Universe, Everything, Outpatient!

Deboned, grated and put on a pizza, Outpatient!

Le sigh… but at least I am home and on the mend.

Also, because of these ongoing delays in my treatment (and in some cases the complete lack thereof) I have decided to set up a medical fund to help me get to London to Prof. Rodney Grahame and Prof. Mathias’ clinic who are specialists in Dysautonomia and it’s related conditions.

The treatment fund has been going amazingly well and the support has been amazing, I cant thank everyone enough for their contributions so far, once I reach the €5000 mark, I should be able to make my first trip over to get the ball in motion with my treatment.

That is all the news I have for now, I just wanted to update all that had happened while I was in hospital and there you have it! Hope you are all well :) :) – The Fainting Goat :)

 

 

 

 

 

Lette’s Medical Treatment Fund

Hey all, I have decided to bite the bullet and go for treatment abroad in London, there is just no way I am getting all the care I need here in Ireland. If you can spare anything, even just a few minutes to share this link, I would greatly appreciate it, Please click on the image below to donate or find out more. Thank you <3

At the age of 28, Lette was diagnosed with POTS and NCS (with Respiratory Arrest). In the past 3 years she was also diagnosed with EDS, and a Seizure Disorder.

In 2013 Lette’s hips failed. She now uses a wheelchair. In May 2014 after a syncope and respiratory arrest, where she needed rescue-breathing for 17 minutes, she started to experience recurring seizures. The health system’s slow pace means Lette must wait months to begin investigations to rule out a brain adenoma.

We decided to ask for your help because, over the past 3 years Lette’s health has deteriorated. These conditions are very rare, and treatment is complicated by a lack of understanding by healthcare professionals. Specialist treatment is simply unavailable in Ireland.

Your assistance will allow Lette to travel for initial, and follow-up sessions with 3 specialist consultants in London. It will provide for diagnostic and clinical examinations, treatments, scans, and associated expenses to discover a course of treatment for her condition, allow her to promptly rule out any high-risk complications, and most importantly to hopefully improve her quality of life.

We deeply appreciate any contribution that you can make, or awareness you can spread, to help Lette get access to the treatment that she needs.

Thank you.

 

 

Featured in The Cork Independent This Week

You may find the full article here, but I will copy pasta the article for you to read anyhow.
A massive thank you to Yvonne Evans for doing the interview with both Deirdre O’Grady and myself. Much appreciated :)

Pots and pain

May is Ehlers Danlos Syndrome (EDS) awareness month. Most people who have heard of the condition, and there are a few, see EDS as a condition whereby the skin is stretchy and joints tend to dislocate easily. However, there is more to EDS then these symptoms. Many patients with EDS suffer from Postural Orthostatic Tachycardia Syndrome (POTS). This condition is one of the most difficult sub-conditions to manage and with no specialists in Ireland, many people go undiagnosed. Although POTS is associated with EDS, many people suffer from the condition separately. Yvonne Evans spoke to two women this week about POTS, the effects and how difficult it is to get adequate treatment in Ireland.
imagePOTS is a form of dysautonomia. The autonomic system is responsible for a host of bodily functions that we do not have to think about, such as sweating, breathing, digestive function, blood pressure and heart rate. The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute or more, or over 120 bpm, within the first 10 minutes of standing. POTS is often diagnosed using a tilt table test (TTT). Symptoms of the condition include dizziness, fatigue, fainting , difficulty exercising and palpitations, to name but a few.31 year old Lette Moloney was diagnosed with POTS in 2011 after 14 years of recurring symptoms including syncope (fainting). After collapsing at home and not regaining consciousness, she was admitted to hospital for one month. A TTT confirmed that Lette had the syndrome and was advised to increase her salt intake and exercise more.

Lette currently takes 18 pills a day and even still, she continues to faint. At the time of this interview, she is on day 10 of her latest hospital visit after suffering seizures which are also associated with POTS. She has yet to receive any tests to find out why she has started having seizures.

“I have a good team of medical professionals now, but I had to find them myself. There are no specialists in Ireland that I can find,” she said.

“The cocktails of drugs had been working. Last year I saw a big improvement in my health and I was feeling well enough to look for work. I then landed a job and it was perfect. I could work from home. But then my POTS started acting up again. I would have to put people on hold and be sick,” says Lette.

Last summer after an 11 day hospital visit, Lette’s consultant recommended that the 31 year old should stop working altogether.

Deirdre O’Grady from Macroom is the mother of two children, Kerri (14) and Aaron (8). Both of her children suffer greatly from POTS and are often hospitalised much to their mother’s frustration.

“I have been often told by doctors that fainting and low blood pressure are normal for children.Two years ago Aaron was diagnosed with EDS and POTS by Professor Grahame in London. I knew when he started walking that there was something wrong but no one listened. We have to travel to the UK to access treatment, the next trip will cost us around €2,000,” says the mother of two.

14 year old Kerri who is sitting her Junior Cert exams this year, often passes out and has been seen by four different hospitals here in Ireland.

“On a trip to Canada, Kerri began complaining about headaches and feeling nauseous. That never went away and after Aaron being diagnosed, I knew in my heart it was EDS and POTS too. She passes out very often, one day she didn’t regain consciousness so she was brought to hospital via ambulance,” explains Deirdre.

Both Lette and Deirdre have expressed their disappointment with the Irish health system. The treatment abroad scheme is available here in Ireland if patients can not access treatment in Ireland. However very few patients are granted the scheme and often spend thousands on each each visit to the UK. Lette has started an online Facebook support group for those who suffer from POTS and other forms of dysautonomia.

Lette is now confined to a wheelchair and Deirdre’s son often needs a wheelchair too.

“It is an invisible illness but it is there, there needs to be a better understanding of both conditions here in Ireland. Kerri’s school have been very accommodating to her condition but I still have to fight for Aaron in school,” says Deirdre.

For more information about POTS, see ‘Irish Dysautonomia Awareness’ on Facebook. Lette also writes a blog about life with POTS and EDS. See irishdysautonomia.wordpress.com.