Updates and Everything Falls In March!

I have been so unwell over the last few months that I have missed and had to reschedule a lot of hospital appointments and now they all seem to have come in March!

I was last admitted to hospital in November last but never got around to writing about it, I was in for a week with another bout of agonizing pain in my right side and gut, all stemming from the Sphincter of Oddi Dysfunction/ Gallbladder pain I had been having all along and that already hospitalised me over 4 times in the one year previously. They took real note of my weight loss this time and started me on new calorie drinks, some new meds, as well as doing some further tests, ultrasounds and abdominal X-Rays all leading up to a second ERCP on the 28th of March, of which I will write about below!

Invacare Action 3 NG – Ocean Blue

Yesterday I had a manual wheelchair assessment with my Occupational Therapist, I have now been measured and fitted for a new manual chair as my current one is loose, rickety and near impossible for himself and myself to push, not to mention that it is far too big for me at a size 18 where I need a size 14 or 15. Yesterday, I was fitted for the new Invacare Action 3NG  (In Ocean Blue!) and have been put on the funding list for it, which means if approved, I will get the chair through the HSE but if not I simply wont get it at all, especially since I was already approved for a new Motorised Wheelchair (Invacare Spectra XTR2 Pictures Below) a few months ago (But is only good for outdoor local use and we do not have a modified car to transport it so I need a manual one to use in the home and transport) There is no guarantee that I will get approval for the manual one, We will just have to wait and see.

Invacare Spectra XTR2

March kicks off with my birthday on the 5th, I have nothing planned only to celebrate with hospital appointments which start on Monday the 6th with a follow up appointment with my doctors who look after my Pots care in UHL. This usually involves looking at the current meds I am on, seeing if they need an update, they ask about my symptoms to date and see if I require another Tilt Table Test or some other tests etc. This will have been my first ‘Pots’ appointment in over a year now so it will be good to catch up and see if any changes are needed.

 

Wednesday of that same week, the 8th, follows with a Urology appointment to check my kidney and bladder function. This Urodynamics Test needs to be done every 6 months or so now that I rely on catheters for painful urinary retention, it can leave you more prone to kidney and bladder infections and kidney dysfunction so that needs to be checked frequently to try and catch infections and Kidney dysfunction as early as possible to prevent any damage.

Image of a Type 1 Arnold-Chiari Malformation. The cerebellum has descended 7mm and there are herniated cerebellar tonsils into the foramen magnum. – Wikipedia

The next day, Thursday the 9th, I have an MRI of my neck and spine, as ordered by my Pain Specialist, to try and rule out Chiari Malformation or other complications because of the severe pain and headaches I am getting coming from around the base of my skull/ top of my neck area, I already get ‘Occipital Nerve Blocks’, for that and ‘Sacroiliac Joint Nerve Blocks’, for the pain I get in my lower back and hips, but I find these nerve blocks are only helpful for a very short period of time (sometimes, if at all!) and are not advised for long term treatment. I have been getting them on and off for over 3 years now altogether as well as continuously taking two types of Opiates (Fast and slow release), meds for neuropathic pain, anti-inflammatories and also muscle relaxants, daily, even with all of these and the injections there has been no proper ‘cure’, especially for the severe neck and head pain, if anything that has gotten worse, so he wanted to investigate that further. We spoke and he explained that he understands that EDSers usually don’t show any evidence of Chiari during a lying down MRI, it is preferred that an upright MRI is performed for a more honest view, however there is no upright MRI in Ireland, one of the closest being in London. I may not need an upright one at all, we will see what the lie down one shows first but he said he would refer me to London if needs be. I will also be returning to London, (privately as none of this is covered by the HSE!) to see another GI specialist that specialises in EDS very soon and I will also see what that specialist suggests I do because the pain and headaches have me bedbound most days now and have worsened my quality of life, where it was very low to begin with! 😦

The following Wednesday the 15th I am back down to Cork University Hospital to see the new private GI specialist I started seeing in November just gone. I won’t mention Names here but, he was recommended to me by a good few people on the Irish EDS related Facebook Pages stating that he is an excellent GI specialist who is very well read up on EDS (Also having studied and worked with the private GI Consultant who specialises in EDS, in London, that I had already heard about (and spoke about in the previous paragraph) and had planned to go and see.) It was recommended that I see him before going straight to London as he can do (in Cork) a lot of the tests they do in London, so I said I would give him a go, and I am so glad I did.

Sphincter of Oddi Placement

I have to say first that My Limerick GI Team in UHL are fantastic in that they have tried almost every test they could to see what is causing all my gut trouble. Since starting all the GI investigations in December 2014, up to now, they found out that I have ‘Gut Dysmotility‘ and ‘Sphincter of Oddi Dysfunction‘,  but beyond medicating and treating me for those, they do not know what is causing my Nausea, Vomiting, Trouble Swallowing and Severe Gut Pain that has hospalised me more than 4 times in the last year, nor do they know why I have lost over 3.5 stone and continue to lose weight even though I am keeping my calorific intake as high as possible on as many days of the week that I physically can. The team have read up on EDS where they have needed to and continue to educate themselves as we continue to investigate (The tests in Limerick are ongoing, even with another ERCP Operation with Bile Duct Sphincterotomy (where they cut the muscle) at the end of this month) but I feel we are still coming to a dead end, Especially when the symptoms have eased only a little and ultimately continue to cause daily trouble and the head GI specialist of the Limerick Team came to me already and said that it would probably be better if I went to London to see what ‘The EDS Experts’ have to say. So on hearing about the GI doctor in CUH who knew his EDS, I made an appointment and went down to see him and get his advice before I decided to go straight to London.

 

The first Cork appointment came in November and I was pleasantly surprised when I met him. He was very well read with regards to EDS, listened to my full medical history, symptoms, complaints, procedures, tests and operations that I already had. Went through the medications I was on and went through some with me that I had never heard of before but he wanted to do a few tests and X-Rays before changing my medications. When he heard I was interested in going to the GI specialist who he trained under over in London, he was delighted to refer me over and suggested that it was a great idea to get his opinion as he would have the most expertise when it came to treating GI trouble in EDS patients and he thinks this London specialist should be able to help me.

He immediately wrote up a referral letter as I was there as well as booking me in for some new tests in Cork hospital that are not available in Limerick. He said these test appointments would be sent to me in the coming weeks after the appointment and sure enough, they did, they came through very fast, a lot faster than I have experienced in Limerick. I had a Barium Swallow X-Ray done in January and still waiting on the results of that which will probably be given during the clinic appointment I have on Wednesday the 15th of March and I am currently waiting on a Gastric Emptying Test appointment which should arrive, I am told, in the next few weeks. Either way I am very impressed with this Cork based GI Specialist who knows his EDS, I will certainly stick with him, as well as the Limerick team, for now while I wait for my London appointment to come through.

Not finished yet! I have a Gynae appointment in the Maternity Hospital on Monday the 20th. Then that Friday the 24th I have an EEG back at the UHL and finally, The Big One! I have another ERCP operation thingy with a Bile Duct Sphincterotomy the following and last Tuesday of the Month, the 28th.

Sphincterotomy – Cutting The Muscle 

 

The ERCP and Sphincterotomy is to treat the severe pain, nausea and vomiting I am having because of what the GI doctors in Limerick think is Sphincter of Oddi Dysfunction. I have written and You can read about SOD and the ERCP procedures HERE.

I have already had the first ERCP procedure where they injected Botox into the SOD and you can read all about how (Kinda bad, though it inevitably worked!) that went HERE.

and that’s it!! That covers all appointments for March only! Every month there is usually something and it feels like, I only get out for doctors appointments these days! but what can you do?! 🙂

Lette xxx

Ambulance Time Once Again!

On August tenth we had to call an ambulance yet again!
I had been in bed for weeks at that stage nursing a savage pain on the right side of my abdomen. This wasn’t the first time it has happened, and probably wont be the last! It got to a stage where I was trying to manage the pain myself at home, trying to avoid going into hospital, but I had to face facts and call it as it got too bad to manage on our own this time.

The Ambulance arrived promptly and began to tend to me. They were a crew of two, Male and female, and were excellent. Friendly, Professional, funny easing the mood when needed and seemed to take a genuine interest in what both Keith and I had to say and contribute.

Unlike the last few ambulance calls, this visit from them wasn’t rushed. It was calm, sedate and gave us time to properly prepare to go into A&E. While they took their time trying to locate a vein on my foot, Keith ran upstairs to the computer, got ready and printed off an A4 sheet with simple information on it about me and my condition, highlighting the main issues I present with, medication I am on and what would be needed when first admitted like fluids, Pain control and Catheterisation, etc.

The reason for this sheet was because through previous experience we have found to be constantly repeating ourselves while giving out my information to different people and yet only parts of the overall story get heard by all different people and nobody has the full story! This time we  said we would try getting this sheet in as a common denominator of information in my files so that everyone will be literally be on the same page regarding my care and see what happens. It was worth a try at least.

After getting a vein in my foot and administering some morphine for pain relief, we were eventually ready to go to the hospital and the ambulance crew were brilliant with everything as well as taking on the information sheet, which they said they thought it was a fantastic idea and wished more people were that organised!

We quickly made it to the hospital, after getting more Morphine on the Ambulance, I was brought straight into the A&E main area, Thankfully I wasn’t rushed into Resus at any stage this time, it was calm and sedate and a far better visit this time round.

I was delighted to hear back from the Female paramedic that she passed on the sheet Keith had given her, to the triage nurse and that the nurse also commented on what a good idea it was to have all the main things highlighted on one page where everyone can see it. She said she would put it in my file so that all the doctors would see it too. So far so good for our little A4 sheet!

While waiting around for a short while, waiting on the triage nurse to find a place to put me as it was busy in A&E that day, The Paramedics were chatting to me and told me they knew some student and new paramedics who were doing papers based on me for some exam that was due the next week! Morto! I found it funny that they would pick me based on my rare or under diagnosed EDS condition or as I like to call it, ‘my awkwardness!’ :p

I once again had terrible trouble getting veins in me, doctor after nurse after doctor tried and failed and it started getting really sore. The vein the Ambulance crew had gotten was already failing just a few hours after it was put in, my foot swelled up  and they were worried as they really wanted to administer fluids and iv meds so they wanted a vein soon. Throughout the following week while in the hospital, this continued. a vein would be gotten and it would fail almost immediately until in the end the anaesthetics team had to be called and they had no trouble getting a vein and thankfully now a note has been put in my file to say that only anaesthetics are to place a cannula on me and no one else, so hopefully all the prodding and poking will come to an end now.

After spending no more 24hours in A&E this time around, I was admitted to the surgical ward. While in the A&E I had all the usual tests, xrays, scopes, exams, the usual trouble of about 50 different doctors trying to get a vein after a brief moment of being cocky and saying something like, “Oh I’m good at this, don’t you worry”, or,”Oh really? Bad veins, huh? well, I like a challenge!” and then just end up being unsuccessful anyway! That always provides me with a giggle especially towards the cocky ones who think I wont post a problem, cha! Say that to me after 20 mins of trying hopelessly! :p Being admitted after 24hours was quick though, considering that I have often had to wait over 46hours before.

I always like being admitted to the surgical ward. Not only does everything seem to be more up to date and cleaner, but Compared to the medical wards, The mood on the ward is generally brighter both from the staff and the patients. The Nurses seem to genuinely care, are not as dismissive as others I have encountered on the medical wards. They get upset when you get upset, they don’t like to see you in pain or discomfort and as much as they are able, they won’t keep you in pain for long and will treat you asap when they are asked to, a lot of the time, they don’t even need to be asked, they will notice themselves and will get you what you need to help ease your discomfort. Also, the electric beds are well cool! :p

I saw My Surgical team the next morning bright and early and they took the situation serious when they saw I had lost over 3.5 stone with the nausea, vomiting and general pain and discomfort I have been having with my gut issues.

As well  as my pain team to cover my Occipital and Sacroilliac joint Nerve Blocks which were due once again, They called in a dietician, a tissue viability nurse to talk about any difficulties I may be having with the chair, thankfully theres nothing serious going on there but she wanted to refer me to a Dermatologist for a small bit of irritation caused by the chair that was easily sorted with some long term antibiotics (starting with an 8 week course and if it needs to continue after that it could go up to 16 weeks), will just have to wait and see how it works. Then they wanted to get a serious OT assessment for me as my own local OT never properly assessed me for manual chair or a bed, given my situation, these are the two basic things my surgical team wanted to be covered while I was admitted.

The Dietician was concerned for my weight loss compared to my height and prescribed a high fiber, high calorie diet as well as Fortisip Calorie drinks to take twice a day along with my usual daily food intake to help at least maintain my current weight if not try to increase it. Sshe also prescribed a new tummy med to take with the other ones I am on to try and help with the nausea and vomiting as well as to try and increase appetite. So I have now started these and I was thinking of doing quick video reviews of the different drink flavours on offer, if you are interested that is! Let me know and I will do it if you like 🙂

Throughout there was non stop testing to find out what was causing the pain in the right side. Xrays, Ultrasounds, CAT and MRI scans, Scopes, blood tests, you name it, it was done.

In the Ultrasound Room!

One outcome is that they have ruled out any Gallbladder issues. There definitely seems to be Sphincter of Oddi, Severe Gut Dysmotility and Neurogenic Bladder Dysfunction problems, as well as a large and painful Lymph node on the inside of my right hip which is causing a lot of pain too and is currently under investigation, all these are contributing to the pain as well as the Ehlers Danlos Pain itself, but they have ruled out Gallbladder and Appendix issues, which is good!

I had 2 major cardiac events while I was in, though I had been battling low Bp all week, these events were the opposite, they came out of nowhere in the middle of the night, they were raging high bp and very fast heartrate, the ecg showed some abnormalities but thankfully they didn’t stay long (about 2 or 3 hours) and after they administered some medication to lower my bp and hr, I seemed to return to my regular low bp self, they were scary though as the pain in my chest when it happened was frightening and I was soaked through with a tempreture. The nurses seemed concerned as Long story  events came out of nowhere. Thankfully though after a few hours I returned to normal and could get some sleep.

Long story short, I got to see everyone that was called for me except OT. The final team was the pain team with the good professor who loves to give injections and this time was no different! He administered my usual Occipital and Sacroiliac joint nerve blocks under ultrasound which he did at my ward bed, he had a little portable ultrasound machine or at least that’s what it looked like and he went for it there and then. The pain team in conjunction with the anestetic team said that I may have chronic piritonitis ( information or even tearing of the abdominal lining that holds your organs) this is still being investigated and will continue as an outpatient appointment along with all the other teams I had to meet while I was in.

The surgical team try everything they can and they are so good to want to learn but they still are not sure exactly what is causing the severe pain and weight loss. I had mentioned to them about a Gastroenterologist specialist in Cork university hospital who is very well up on EDS and speaks regularly as well as trained under Prof Aziz over in London whom I hope to see as soon as i am able to travel. They said go to see him, just to see if he can help and my surgical team said they would be delighted to consult with both him and Aziz going forward as they are of the mind that more on the overall team to help me then the better!

In the meantime my team wanted to bring my case up at an EGM (emergency general meeting) where the head consultants and specialists of a department get together and discus special cases at a count table meeting so that other people’s views and suggestions can be taken on board, then once they have news they  will call me for a new outpatient appointment or send me for further tests if required.

 Unfortunately the OT never turned up and there were questions as to wether she would turn up anyway as she usually only sees Stroke and Neurology patients so my surgical team along with the head nurse on the ward rang her boss as well as had to write a letter in order to argue the case as to why they felt I was a special enough case for her to make an exception and come and see me, alas I was left waiting all over the weekend just to see her and she never turned up so my team decided to send me home at this stage with some new meds and a ton of outpatient appointments and they would follow up with her to get me a much needed appointment as my local OT isn’t really doing what she is supposed to do. 

In the meantime I have made a new appointment to see that Gastro specialist in Cork, his name is Akbar and I have heard great things so I really hope he can help. That appointment is on the 20th of this month (September) and of course I’ll fill you in on how that and any subsequent appointments go.

For now, I’ll just chill and try to recover 🙂

Thank you as always for taking the time to read.

Lette ( the fainting goat!)

Made The Longlist of The Irish Blog Awards 2016!

 

WOO!! So not only did the Blog make the long list finalists for Best Health and Lifestyle Blog in The Irish Blog Awards 2016, but also one of my blog posts, ‘The Good, The Bad and the Emergency‘, made it onto the the long list for Best Blog Post!!

I am delighted and I have you all to thank for adding your entries for the blog! I cannot tell you how much I appreciate it 🙂 From here on, as far as I know, The blogs will now be judged by a panel and then those who make it onto the shortlist may need to get votes for the remainder of the judging so if I ever even make it that far, I may be back to ask for some votes! :p

For now, Thank You all once again and I will keep you posted on how everything goes 🙂 ❤

Lette (Fainting Goat)

The Blog Awards Ireland 2016 – Nominations Now Open

Hi all,

I am delighted to say that Irish Dysautonomia Awareness has been entered into this years “Health & Well Being” – Personal Blog – Category in the blog awards nominations and hopefully will make the long list at least, that’s where it got last year so to make that again would be really nice! 🙂

If YOU would (Please) like to Nominate this blog Please click HERE (Give it a minute to load, it can be slow!) or click the image below and follow the instructions. I would greatly appreciate your input, THANK YOU! You need to register with the site but you can do so quickly and easily  by signing in with your Facebook and you can control what information you give them.

Please enter The Title of the blog: Irish Dysautonomia Awareness,
Also pop in the URL of this Blog which is: https://irishdysautonomia.wordpress.com
also please be sure to enter it into the ‘Health & Well Being’ – Personal Blog – Category.
Thank you ever so much!

Please click here and enter the info to Nominate this blog! – THANK YOU!

This year there is also an entry to nominate your favorite Blog Post from the blog here. In the last number of months the post that has raised most interest seems to be this one:
‘The Good, The Bad & The Emergency – Part 1’

I would also greatly appreciate if you have the time, to maybe nominate that blog post Please and thank you most kindly! as far as I can figure, there’s no harm in trying! 🙂

It is the same process as the first, please click Here:
Hit ‘Nominate a Blog’ – Enter the ‘Blog Post’ Title as: The Good, The Bad & The Emergency – Part 1

The Blog Post link is : https://irishdysautonomia.wordpress.com/2016/04/05/the-good-the-bad-and-the-emergency-part-1/

The Category is ‘Best Blog Post’ – Personal Blog

Please Click Here and Enter ‘Blog Post’ Details (As I have laid out above) for Nomination – Thank You

Thank you so very much for you time in doing this each and every year, I may be back to you for more support if we make it to the ‘public vote’ part but even if it doesn’t get anywhere, a few more people will view the blog as a result of just entering and further our much needed awareness, even just a teeny bit.

Thank you once again,

Lette – Fainting Goat!

EDS Awareness Month – 2016

Courtesy of Google Images

 

It’s Sunday the 1st of May 2016 and so kicks off Ehlers Danlos Syndrome (EDS) Awareness Month.

This year is pretty special in that there is a, now Sold Out, International EDS Symposium in New York, 3 – 6th May, where a host of working groups of some of the world’s leading Specialist Consultants, Doctors and many others, get together and will reclassify the diagnostic criteria for all Ehlers Danlos types.

I will let the amazing organisers, The Ehlers Danlos Society, tell you all about it, be sure to check out their website right ‘Here‘

” The Ehlers-Danlos Society is proud to announce an international symposium on Ehlers-Danlos syndrome in New York City, May 3–6, 2016, generously funded by EDS UK and the Ehlers-Danlos National Foundation. The symposium is being held in alliance with the EDS consortium in Ghent and medical professionals internationally.

The primary goal is to reclassify the diagnostic criteria for all the types of Ehlers-Danlos syndrome. The symposium is also purposed with producing guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management.

We are excited to be working on a project that will change the lives of those with EDS. Updated diagnostic criteria, published in medical journals across the world, will increase and improve diagnosis, and the management guidelines will finally ensure that there is an internationally agreed-on treatment plan that doctors will be unable to ignore. Finally our community will have the foundations we need to ensure more research, funding and recognition.

Very generous private donations have allowed us to get the symposium underway. We are extremely grateful for the support, but more needs to be raised to make this most important event a complete success. Help us “Make our Invisible Visible” by donating to this project; anything you can give will be very much appreciated. To donate, please visit EDS UK or EDNF. “

This is very exciting stuff but I’d say it will take a long time for any of it to filter into the Irish Health System, but we have a few excellent EDS/HMS, Connective Tissue and Collagen disorder related groups here in Ireland who work tirelessly to spread more awareness and the most up to date information and research. Here are the ones I am most aware of, if there are any I have missed and I’m sure there are, please, really please let me know of any more Irish related Connective Tissue groups.

Please click on the names below to be taken to these pages. Also be aware that most of these links also have Facebook and Twitter pages as well as private, closed support groups for patients and relatives be sure to ask at the links below if you are interested in joining.

EDSAwarenessIreland 2016 EDS Awareness Month Logo 

EDS Awareness Ireland

Irish EDS & HMS

Marfan Support Group Ireland

Marfan Research Foundation Ireland

Irish EDS&HMS have a lovely page on their site giving an example of different connective tissue disorders that incorporate Hypermobility, as there are a few others besides EDS itself. Is certainly worth the quick read through. Find it , ‘Here‘

Only 2 weeks ago or less, Irish EDS&HMS also got the amazing opportunity to have a supporting clinician to sit on the International EDS Symposium in NY, they grabbed the opportunity, set up a fundraiser to send a medical professional from Ireland, worked incredibly hard, but unfortunately, though they got in touch with many people, they could not find someone on time to send over.

This just shows to prove how badly the medical support for EDS is here in Ireland. We have a few Consultants and Doctors with an interest, but no experts unfortunately. Hopefully this will change soon after the Symposium and EDS will be better recognised and supported here.

Thankfully though, there is another follow up conference in Baltimore in June where the findings of the NY Symposium will be formally discussed, any funds that have been collected already for the NY Symposium will be repurposed for the Baltimore conference where hopefully they can find someone in the medical community to support us with EDS.

If you would like to support the Irish EDS&HMS fund to send a medical professional to represent Irish EDSers in Baltimore then please, please donate ‘Here‘ or click on the image below.

Please click to support the Irish EDS & HMS Fund to send a medical professional to represent Ireland at the Baltimore EDS Conference.

This is so very important for the future of diagnosis and treatment of EDS here in Ireland. If a medical professional can go it means the information will be translated into the HSE quicker than if Irish EDS&HMS don’t get anyone and have to try and push the information into the HSE as patients or advocates themselves, they may not be taken as seriously or the information will not be treated as urgently as it would if us EDSers have the back up of a medical professional who already works within the HSE.

For the month that’s in it, here on Irish Dysautonomia Awareness, I will do my best to post regularly, share other people’s EDS blog posts share, photos, research and anything that will help spread more Awareness of EDS throughout May.

Thank you as always for taking the time to read and if YOU would like to share anything EDS related with us, a post, story, photo, drawing, meme, video, research, ANYTHING! Please get in touch either via our email: irishpotsies@gmail.com or on the blog here directly, through Facebook, Twitter or even our YouTube channel, and I will be sure to share it on here and through the social networks.

Cheers folks, Happy EDS Awareness Month 2016, let’s make it a good one if we can 🙂

Irish Dysautonomia Awareness EDS Logo Version!

Syncope in the Hydro Pool, Caused a Small Panic!

So there I was, after putting down 2 weeks of being ill and fainting all over the place, I had canceled hydro and physio a number of times due to the flare up, there was just no way I could physically do it.

I was finally feeling better, no faint in about a week and I was sitting on the transfer chair in my swimsuit, waiting to be lowered into the water.

“Hang on”, said the physio.

The assistant stopped turning the crank and the chair stopped dead, my feet hanging off the end, just above the water. I was suspended like a prisoner as she took a look.

“You’re looking pale, how are you feeling now, are you sure you are able for this today?”

I reassured her that I felt well, which I did, at the time… but that I could not guarantee that I wouldn’t faint, as that is the nature of the illness!
She looked at me skeptically and gave in.

“Alright then”, she gestured for me to be lowered in and down I went.

I felt the warm liquid envelop my skin like I was being evenly coated in wet cellophane. Regular pool temperatures reside at about 28ºC while this and all other Hydrotherapy pools stay at about 35ºC  which feels… lovely, actually 😀

Warmth and Pots don’t usually go well together, this had never bothered me before now.

The physio kept a skeptical eye on me as she gave me some exercises to do and went over to help another patient in the pool.

Leg raises, looking around, warm pool, sunlight pouring in the windows… No warning…

Darkness… a sound of water in my ears… muffled, panicked voices, bubbles, water in my eyes, ears, mouth, I cant breath… Darkness…

I cant remember anything only those snippets until I woke up suddenly, some time later  with pretty severe pains in my chest and ribs. I woke but my eyes were still closed, I could hear a siren going off. Urgent voices, someone counting… that pain in my chest again…

1, 2, 3, 4, 5, …

1, 2, 3, 4, 5, …

Chest compressions, well that explains that!! I must have made some sort of movement or noise, though I couldn’t talk at that point, the physio scooped up my head and asked me to open my eyes.

BLINDED!!! oh gawd, just white light for a few moments then I could see… everyone!!!!
where there was only the Physio and her assistant before, now there were a tonne of people standing and kneeling around me!!

A few nurses, a couple of surgeons (no seriously, he was the only head doctor on call that day so he and his assistant came down from surgery in full get up!!)
A couple of porters, a load of physios that I had never seen before, and some lady in a suit asking a load of questions and rushing around filling out paperwork!!

I had to be kept on the ground for a while to keep an eye on me and to try and wait for my BP to rise again, apparently I frightened the crap out of them!! When I was out, the physio couldn’t find a pulse so decided to start chest compressions on me after they got me out of the water… I was nursing those ribs for a good 5 days after it but how can I complain? She did her job and did it well with what happened!

Anyhow, making a long story slightly longer… That is the end of Hydrotherapy for me for the moment as they don’t want me back until the syncope is under control. I am peeved to be honest, I found it very good, but I understand why I cant take the risk so Ill be sticking with dry physio for now!!

Not much going on at the moment other than, still waiting on the Motorised chair, no idea when that is coming. I am due a load of different hospital appointments but no sign of them yet, I have to be called for painkilling injections in my sacroiliac joint and hip, again, no idea when they are coming and other than that I am just tipping away trying to keep myself busy.

So, How are you folks doing, any news for me??

Sleep Paralysis, Sleep Fainting and How Your Brain Can Frighten You!

This will be a bit of a long post, but bear with me… you may have experienced this too! 🙂

…it started when I was 15.

It was late in the night, about 4 or 5am. I found myself lying in my bed on the flat of my back. The room was dark but crepuscular light seeped in through the unlined curtains. The light of the hall outside leaking in under the door… Semi asleep, semi awake… a pressure on my chest, a looming, shapeless, black, figure crawling up my body.

I could feel its pressure on my body, I tried to move and I couldn’t. Emotionally heightened terror filled my solar plexus. My mind was racing, I was completely paralyzed by fear. My eyes were open, I felt wide awake, I had full control of my thoughts. I could see around my room, but somehow… I was still in my dream. The dream was being acted out in my room, shadowy dark figures were floating and moving eerily around my room. my sister snored gently in her bed, while I tried desperately inside myself to scream and call anyone for help…

A strange sound began to fill my ears… Behind low whispering voices, children laughing and strange music I had never heard before.

The looming, heavy dark figure was now up on my chest… I could feel its ghostly hands tighten around my neck. It didn’t make a sound. Breathing became a struggle as I could feel this creatures weight lying on top of me, fear choked me, I tried so hard to scream…

what was that sound??

Like a moan, it was high pitched, it varied in frequency and sounded for all the world how you would imagine a banshee would cry out and whail!!

I soon realized this sound was coming from me… I was trying to scream in my paralyzed state and it emitted from my throat a weak, eerie sound that sounded nothing like a scream, but in my dream I was screaming as forcefully as I could.

It’s hands closed over my mouth, it’s face right in front of mine, but it didn’t have a face… it was just a dark, heavy shadow with holes for eyes… it opened its hollow mouth and engulfed my face… My heart was pounding, I was sweating, I couldn’t breath, the distorted world around me was fading and just as I felt life was leaving me…

“LETTE!”

“LETTE!! Wake up your FREAKING ME THE HELL OUT!”

My eyes snapped open, and I was now properly awake, in my bed, my sister sitting up looking petrified at me with her knees up tight and her quilt pulled up to her chin!.

My weak, strange moan that was a scream in my dream had woken her… I scared the crap out of her and I was terrified beyond belief!

I decided I needed to know what this experience was, I am rational and I do not believe in the supernatural – only as an interest, I am fascinated by it, but thankfully I found a rational explanation.

I had just experienced Sleep paralysis.

Sleep paralysis is a phenomenon in which people, either when falling asleep or wakening, temporarily experience an inability to move. More formally, it is a transition state between wakefulness and rest characterized by complete muscle atonia (muscle weakness). It can occur at sleep onset or upon awakening, and it is often associated with terrifying visions (e.g. an intruder in the room), to which one is unable to react due to paralysis. It is believed a result of disrupted REM sleep, which is normally characterized by complete muscle atonia that prevents individuals from acting out their dreams. Sleep paralysis has been linked to disorders such as narcolepsy, migraines, anxiety disorders, andobstructive sleep apnea; however, it can also occur in isolation.^[1][2] When linked to another disorder, sleep paralysis commonly occurs in association with the neurological sleep disorder narcolepsy.^{[2] – Wikipedia}

I now get this 3 to 4 times a month. Sometimes I wake up with the strange moaning thing, which has frightened my husband so many times! Sometimes I just feel something touching me and the feeling of fear just makes me jump awake and there is nobody there. Sometimes I hear voices or music or strange sounds, its freaky!

There is nothing unexplainable or supernatural about this experience, it is quite literally your brain working overtime, and you happened to wake at the wrong time!

Here is a very basic understanding of how it works from my own experiences and perspective;

When you sleep, your brain releases some chemicals and hormones to literally paralyse your body so that you dont get up and act out your dreams (incase you decide to throw yourself out a window or harm someone while you are dreaming) This is a natural proces to help you recover and repair your brain and body from the day before, by keeping you still and sedated.

If you happen to wake during this process, you experience a transient state where you have muscle atonia (weakness) or paralysis, you cant move, you can open your eyes but the chemicals in your brain are still active… so you can see or hear or even feel your dreams around you in very lucid detail while your eyes are open and you cant move. A feeling of fear is associated with this and a looming shadowy figure is sometimes experienced… this thing is called; ‘The Hag’ appropriately named because of the fear and the pressure on your chest when you see it!

This is a very basic run-through of how this experience feels, Please read in detail HERE how it happens, it really is fascinating and I would love to hear your feedback on your own experiences.

Recently though, I have been experiencing something different… and very frightening from a health and medical point of view. I havent yet spoken to my specialist about this but I feel I may need to going forward.

I think I am fainting in my sleep!

WHAT? but you are already unconscious! how can you fall unconscious when you already are!?

I know, right? but please let me explain! It doesn’t work like the Inception thing! :p I dont fall deeper into my dreams…

I have Postural Orthostatic Tachycardia Syndrome because of my EDS, so I faint on a regular basis while awake. I have become acutely aware of the symptoms and feelings inside me when this happens and just before I faint. I have to be, so that I can try and control it as I sometimes stop breathing when I faint and this is not good for the ould head and brain and has caused nerve damage previously from the lack of oxygen! I have gotten better at noticing a faint coming on but sometimes I have no control and just hit the floor (insert ‘Let The Bodies Hit The Floor’ meme here!)

When I sleep, I dream very lucidly. In full colour and sometimes I can control how the dream plays out, not every time but nearly always in my dreams I chose flying as my method of getting around! (dont laugh, I really do and it feels exhilarating!) I have proper and extreme intense emotional feelings, I can touch and physically feel things, tastes, smells, pain, pleasure and extreme tiredness when I have overworked myself in my dreams!

Isn’t that crazy? If I play or do too much in my dreams, I can physically get wrecked tired and feel how it affects my body exactly like when I am awake, even though I am asleep and lying still. It is almost like in my dreams I have slipped into another me in the dream world!

Further to this, in my dreams I have started to experience fainting, just like I do when I am awake and active!

I feel the pressure in my head build, my temples and behind my eyes start to throb, stars spinning around my head, a dark tunnel seeps in from my peripheral vision making everything slowly go dark. My muscles feel heavy, I feel disgusting hot rising nausea crawl up from the depths of my gut and up into my throat, I begin to sweat but always feel cold, feel like I am going to vomit… A loud wooshing noise grows intensely loud in my ears, like I am falling through air.

While I am dreaming this, sometimes, I experience myoclonic jerking, my husband notices this. and I also can bite my tongue and the inside of my mouth to the point where I wake up with my mouth filled with blood.

The darkness closes in, deeper, deeper, I feel myself fall under into a faint, it literally feels like someone is just turning your ‘lights’ off and you have no control over it, then there is just darkness for a split second and I snap open my eyes and feel utterly dreadful!

When I wake I feel just like I feel after I faint in my waking state. I had been sweating, I am viciously nauseous, my body aches, I am physically weak and feel sore, tired, and confused… I have an urgency to both vomit and pee… I will get up, go to the bathroom, then hit the floor flat with a hard thump.

I have experienced this many times and wondered if I am in fact fainting in my sleep, or at least experiencing the precursor to a faint, then in my weakened state when I get up, I faint properly… it is all very odd but I did do a bit of research and found I am not alone, at all! Thankfully… I was beginning to worry about my own sanity! :p

This is called nocturnal syncope and I found a medical journal explaining a trial for testing this condition. It is an amazing read, HERE!

PATIENT HISTORIES

Patient 1 had her first nocturnal syncopal episode at the age of 40 years. After sleeping for some hours, she awoke and felt nauseous with abdominal discomfort and the urge to defecate. She lost consciousness while lying supine. She sweated profusely but did not bite her tongue. Her husband observed transient myoclonic jerking. After this, similar episodes occurred regularly (at least one a month) and only at night. The syncopal episodes never exceeded one minute and were atraumatic. She was incontinent of urine and faeces once. A tilt test provoked a vasovagal reaction followed by seven seconds of asystole and reproduced her nocturnal symptoms. Because of ongoing symptoms she underwent neurological investigations and a typical nocturnal episode was recorded during continuous electroencephalographic (EEG) and cardiographic monitoring (fig 1​1).). The EEG was judged normal by two independent neurologists. The ECG, however, showed a pronounced bradycardia (36 beats/min) during the episode, with an atrioventricular node escape rhythm. – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1768202/

So this one particular lady experienced a lot of the same things as I did during these episodes. I also found other examples HERE and HERE!

A 2004 research publication suggests patients may awaken from sleep with symptoms of forthcoming neurocardiogenic syncope (Krediet, Jardine, Cortelli, Visman & Wieling, 2004). This suggestion may seem to contradict current teachings on this disorder. However, research shows that transient autonomic mechanisms that predispose to vasovagal syncope may occur during sleep (Shneerson, 2000, p. 1-15). – http://www.dinet.org/NCS/ncs.htm

So it’s nice to know im not going nuts, but these are crazy experiences which make some people think it may be a supernatural occurrence  when it is not. Your brain is just messing with you!

The sleep fainting is new though, and though I have found some medical papers on it, it doesnt seem to be extensively written about, so I would love to hear your experiences of Sleep fainting or Sleep paralysis. Please contribute and thank you for reading 🙂

– Lette