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 ❤

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.

POTS 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.

Back In Hospital, Yet Again!

Hey all,

just to let you know things are going slow on the blog and the related forums at the moment as I was rushed to hospital on Friday, with severe seizures.

I won’t fill you in on the finer details just yet but, I will do a full post about it when I am out of here! 🙂

I am currently having neurological assessments and will know more soon, in the meantime bear with me and as soon as I’m near a computer, I’ll spill all!

Lets just say, I have a completely new found, ultimate respect for people who have Epileptic or related seizures, I never realised just how rough they can be on the ould body, but sure, we will keep fighting!

updates soon, Fainting Goat 🙂

Bendy Fingies!

I am not as bendy as some, but they are fun party tricks, but seriously,

DO NOT DO THESE

people with “joint hypermobility syndrome” are subject to many difficulties. For example, their joints may be easily injured, be more prone to complete dislocation due to the weakly stabilized joint and they may develop problems from muscle fatigue (as muscles must work harder to compensate for weakness in the ligaments that support the joints). Hypermobility syndrome can lead to chronic pain or even disability in severe cases. – Source

If you already have EDS, this is no good to be doing to your joints as it promotes dislocations and subluxations. I have had my fair share of stupid injures throughout my life over flexible, messed up joints and bones… and the fact that I did Martial Arts, Cycling and Fitness Instruction before I knew I had EDS and Pots so that added to the injuries too!! :p Anyway, just wanted to share a few silly bendy pictures with you! 🙂

If you have any pictures you would like to send relating to your Dysautonomia and you would like them featured, anonymously or otherwise, please send them onto irishpotsies@gmail.com or share over on the Facebook or Twitter pages. 🙂

Happy EDS Awareness Month!

Dysautonomia Diagnosis Update – 2014

As May is EDS Awareness month and I was asked to do an update on my Diagnosis story to share with you all to try to raise a little awareness of the condition, here I am once again, another year later, 2014 already and lots has indeed happened in the last year that I can add onto the overall diagnosis story.

If you would like to read 2013’s update and the full background of my diagnosis, you may find that here.

So I will give you a brief background to get going, then the updates from the last year or so.

In April 2011, after nearly a month in hospital and numerous medical tests,  a Tilt Table Test confirmed a diagnosed of Postural Orthostatic Tachycardia Syndrome and Neurocardiogenic Syncope also called Vasovagal Response.

In October 2012 I was diagnosed by a Reumatologist in Cork that I had Ehlers Danlos Syndrome Type 3 Hypermobility Type, which in turn would be the organic cause of the Pots.

My symptoms and signs at the time, and still do consist of Syncope (Fainting) sometimes with no breathing and with seizure like activity, It has happened countless times now, and some of the serious fainting without breathing has caused short term paralysis in my legs and lasting neuropathy. I have Very Low Blood Pressure, Dizziness, Severe Nausea and tummy/gut trouble and vomiting, Excessive fatigue, Costochondritis, Easy Bruising, Blue Sclera, Severe pains in my Joints mainly in the lower limbs, back and right shoulder.

I take 18 tablets a day, 8 different kinds spread out over 3 times a day.

Last year saw a big improvement in my health that I was just feeling well and fit enough at the start of the summer to think about applying for jobs once again, then in April 2013 I had an interview, they called me for a second interview and I landed the job. It was perfect. I worked from home, on a set schedule where I had to sign in online at a certain time and be available to give tech support to customers calling in. All tech was provided, I won’t name the company but needless to say, I adored the job. I worked hard, I was actually doing really well and made lots of friends.

Everything was going amazing until my Pots started acting up, sometimes I had to put people on hold as I hacked into a bucket! The pain in my pelvis, hips and lower limbs became so much that crutches no longer supported me well enough.

In August I was in a wheelchair, In September I was admitted to hospital for 11 days for investigations and pain management. The specialist advised that I didn’t return to work.

I was in a little shock I think, the job was just working out, then out of nowhere…
We had to take time to let it all sink in, it did, we had our ‘Why Me?‘ moment, yes, I just did that! 😀 and then I realised I had to sort everything out, like work, social welfare, adaptations, treatment like Physio & Hydro Therapy, Occupational Therapist, Pain Management, Learning to live needing a wheelchair, for now at least (I live in hope, but I’m not delusional!!) 😉 :p

There was just one morning after I got home from the hospital and had let it sink in where, I just said, screw this, it’s not going to do it’s self! Keith and I got to making lots of phonecalls and got an Occupational Therapist and Physiotherapist on the go, I rang to end work and get all that sorted and only started going about the process of applying for certain social welfare and home needs which to my surprise had been cut substantially from what had been expected. Only in recent weeks have I been told that I will not hear anything back from the Housing Adaptation Grants (if at all) until ‘at least’ 2015!

My Occupational Therapist is amazing, so utterly helpful and always tries to do what she can, My physio is also very helpful but unfortunately I only get to see him roughly once or twice a month. I had started Hydrotherapy, found it very helpful but then had a syncope in the pool and that was the end of that! So for now, I am not getting much in the way of physical progression with my legs, though I do hope to try and get referred to Harolds Cross in Dublin, where they do intensive, in house, Occupational, Physio and Hydro therapy, while you are accommodated at the hospital for careful monitoring, but we will wait and see!

What a lot of people don’t realise is that, there are NO Dysautonomia specialists anywhere  in Ireland, some have a bit of knowledge around Pots but not EDS and NONE have been trained specifically to treat these conditions, so treatment is more of a mix of everything they think you need, a stab in the dark, and then there is no communication between the different doctors that are treating you. The closest specialist Autonomic center and Qualified Specialists in the field of Dysautonomia are in London and the HSE simply doesn’t want to know about sending you over to get the treatment you need. They are also refusing the Travel Abroad Scheme to the majority of people who apply for it. To go over privately is simply not an option for the majority of us as we simply cant afford it.

Since being diagnosed with Pots originally in April 2011 and EDS in October 2012, I still faint, I also have syncopies where I can have seizure like activity and I can stop breathing with all faints, Some of which have left me with paralysis and long term muscle neuropathy. I constantly have pain and often severe gut and tummy trouble with the EDS and it’s complications. I am now in a wheelchair a year come August and I have had many ambulance rides, rushing me into emergency and I still regularly have many hospital stays, visits and appointments.

but you know what? I count myself lucky! Things could always be far worse and I am very lucky and endlessly thankful for certain people in my life, Namely, my husband, I would be truly lost without him ❤

My family and friends deserve saint and knighthoods for their patience with me as I can never commit to anything, but such things are out of everyones control.

For now I keep myself busy and roll with whatever is thrown at me!

Thank you for reading my story 🙂