My Personal Diagnosis Story; Updated 2018

 

Hi, I am Lette and I have EDS, Pots, Gut Dysmotility, Neurogenic Bladder Dysfunction, Severe hearing loss and a host of secondary complications to all of these. I will try and keep this as concise as possible but I feel it is still going to be a long post, please bear with me!

It all started on a Tuesday morning in April 2011. After a lifetime of silly ‘Mickey Mouse’ symptoms that didn’t lead to anything conclusive, I just thought I was feeling a little under the weather.
I got up to shower and get ready for work and as I was coming out of the toilet, I suddenly felt really weak, faint and overwhelmingly dizzy. I called out to my husband who got to me just as I lost consciousness and he caught me before I hit the ground.

We didnt know what was going on, My husband was brilliant trying not to panic but everytime I would come around and try to stand I would lose consciousness again!
He got me to lay on the bed while he called the doctor and got advise to either immediately call an ambulance or get me to A&E straight away.

We opted not to wait for an ambulance as it would be faster to drive me directly to the A&E.

Long story short I ended up staying nearly a month in the hospital under an initial doctor who tried some tests but ultimately seemed to be very dismissive of me and in the end told me to get up out of bed and just ‘walk it off, and you’ll be grand’, great advice to give to someone who was shortly thereafter diagnosed with, ‘a very impressive case of Pots’, after this we had to demand a second opinion knowing something was seriously wrong with me. I couldn’t sit or stand upright without losing consciousness and I was just told to walk it off?!

Needless to say the second opinion doctor took my case very seriously, did many more tests, one of which was a Tilt Table Test and we discovered that I did indeed have Pots and NCS (Neurocardiogenic Syncope) but the cause was unknown. I was medicated heavily for my issues (very low BP, High HR, Nausea, Joint pain, Sweating, Syncope sometimes with respiratory arrest (without breathing), given some lifestyle advice like eat more salt and drink plenty of black coffee to raise blood pressure and sent on my way.

The following months after my Pots diagnosis I was continuously being admitted into hospital and fighting to find a cause for the Dysautonomia, 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 at the time were progressively getting worse, I was fainting very regularly throughout the day sometimes without breathing which in the worst of cases led to new seizure type activity and short term paralysis in my legs causing long lasting neuropathy. I was getting severe headaches and excruciating pains in my joints, very low BP, High HR, Dizziness, easy bruising, Blue Sclera, Excessive Fatigue, severe nausea and vomiting with gut related pain.

This happened for months off and on without any reprieve until April 2013 where I slowly improved at the start of the year, well enough where I decided to go back to work for Apple Computers from home.

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 worse that crutches no longer supported me well enough.

By 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.

Things went downhill fast with my health and I soon learned that I would have to fight the HSE with some of my issues. I had to do my own phone calls to start Physio and Occupational therapy as nothing was being done from the hospital side. My Consultant who looked after me for Pots also had some problem with the diagnosis of EDS that I got in Cork, they never took it seriously and tried to convince me that I didn’t have EDS but I only had ‘Benign Hypermobility’, which they said would have no bearing at all on my health or any of my issues!

In July and August 2014 I was at my worst health wise. I was admitted to hospital after being rushed into Resus via ambulance after having a very long seizure. I was admitted again for nearly a month where I ended up in ICU and HDU (High Dependency Unit) because of these seizures. The consultants sent me to Beaumont Hospital in Dublin via ambulance again to rule out Epilepsy of which all was clear thankfully and they put the prolonged seizures down to a major reaction I was having to the antiepileptic drugs they had me on to manage them, I was promptly taken off these drugs and in turn the seizures stopped almost immediately. It looked like the first ever seizure I had may have been a once off dysautonomic seizure caused by lack of oxygen and it was the antiepileptic drugs they had me on that made matters worse.

It was during this time that I decided something had to be done to try and help myself. There are no EDS specialists anywhere in Ireland and the closest place there were any was in London. I started a GoFundMe campaign and slowly raised enough to go to London and meet a Professor in rheumatology who specialised in EDS to get a proper diagnosis that would confirm to my consultants (and myself) that I did in fact have EDS and to get some sort of treatment plan that my consultants here could work off. This trip was a success. I met Prof. Rodney Grahame, got an official diagnosis, a treatment plan for my consultants at home and it was only after I got my letter from Prof. Grahame that my consultants started taking my diagnosis seriously and actually followed the advice given on the treatment plan.

Things started running smoothly for a while with my treatment, I was getting regular physio and occupational therapy, regular pain management and outpatient appointments to keep an eye on everything.

Slowly though, in 2015 things went downhill again and I started having severe gut related trouble. Over the course of the following couple of years I was in and out of hospital constantly, I lost a huge amount of weight, couldn’t eat anything without nausea or vomiting, got extremely weak and fatigued and my seizures returned after a year of being dormant, my consultant at the time wanted to operate on my gallbladder thinking that may be the problem with my gut. Other than that, he admitted to me outright that he didn’t know what to do or how else to help me and advised I seek help elsewhere if I knew where to look.

In 2017 I had to fundraise again to return to London to meet another Professor who specialised in EDS and Gastroenterology, Prof. Aziz. Thankfully since this consultation in London and following the advice he gave me I have improved greatly, with regards to my gut trouble at least.

I still get serious symptoms and there is no cure for EDS. There are no EDS specialists in Ireland and it is clear from my, and others diagnosis stories that there is little help within the health system in Ireland. We are already fighting illness, we should not have to also fight the health system for treatment that should be readily available here and we should not need to travel or worry about organising funds to do so when we are in this state and yet, we need to or we will just be forgotten about.

I worry that my symptoms will continue to flare and get worse as time goes on. I worry something serious may happen and that the doctors here may not be able to help me or others in this situation if that happens. My story had some major up’s and down’s and yet I am not the worst I have heard. There are others out there that have had much worse experiences than I have.

We seriously need an EDS specialist here in Ireland to help us. I am forever surprised by the constant stories I hear of peoples GP’s and hospital consultants not knowing what EDS is. It is 2018, is it really that far fetched to imagine having a consultant here that specialises in EDS or at least some training for our doctors? I think not! #EDS4IRE 

Lette

 

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Blog Awards Ireland 2017

Hi all,
Hope you are all as well as can be, sorry about the little hiatus, I was in hospital and im only just out but more on that in another post, right now I am back for a bit of begging!!

It’s that time of year again where nominations for the best blogs in Ireland go forward for the Blog Awards Ireland and I have just entered this humble little bloggie in for the running.

If you have just a moment to nominate, and thats all it will take, please nominate the blog by scrolling down and popping in the blogs url at the following link

If the blog makes it to the Long List I will be back looking for further support from you so I just want to say a massive thank you to all who take the time to support this blog, THANK YOU!

Will be back soon with another medical update from while I was in hospital and more on my current new diet 🙂 Thanks all 🙂

Meeting Prof. Qasim Aziz in London

Day: Saturday 13th May

Time and Itinerary:

5:30am – Wake up, get ready!
6:30am – Arrive at Shannon airport

6:35am – Check in
6:45am – Get Breakfast

7:00am – Board Plane with the help of Disability Services

7:15am – Flight Take Off

8:15am – Flight Land at Heathrow

8:45am – Get through security and make our way to the Heathrow Express Train

9:15am – Heathrow Express arrives at Paddington
10:30am – Hang around Paddington for a little while, get coffee

11:30am – Taxi to Consultants Appointment at The Physicians Clinic at Devonshire Street
12:15am – In appointment place, fill out forms and go into meet Prof. Qasim Aziz

Prof. Aziz was very welcoming, I found him to be thorough, interested, very educated and deeply experienced with EDS and it’s comorbidities.

I had everything written out over two A4 pages, Which he said he was delighted with and wished more people would come prepared! It had My Diagnosis, Investigations done to date, Medications, All my doctors listed, Current Symptoms etc. So he went through everything with me.

To make a long story short I was there over an hour, he didn’t rush us at all and listened to everything both my husband and I had to say about all the symptoms, pain and weightloss I have been going through with my Gastrointestinal problems.

He did a few basic tests with me while I was there and then sat me down to explain what he believes is going on with me.

He reckons I am high in ‘Histamines‘, meaning that I am all inflamed and raw throughout my body as a result it all contributes to my various symptoms even outside of gastro problems. He said that a ‘Low Histamine Diet‘, would be of huge benefit to my lifestyle for 6 months and then I can introduce other foods back into my diet.

He added things like, taking probiotics 2 to 4 times daily with the diet as well as the supplements that I may be lacking in like, Vit.C, Vit B Complex, Omega 3 and Chelated Magnesium.

He went through all my medications and changed them about as well as adding some to help my tummy. Apparently a few of the meds I am on to help my gut are in fact paralyzing it, so I have to cut back on those and my opiates as they are slowing my gut function down.

As the LowHistamine Diet is sugar free, he has also changed the Fortisip Compact calorie drinks I have been taking as he said they are full of sugar, so he changed them to E028 Cartons instead.

He mentioned that he has had people like me come into him in wheelchairs and after this diet and the other extensive recommendations he gave, they are now walking, relatively cured and back to work, living a normal life once again as the symptoms are now controlled.

He also said that everyone is different and what may work for one person may not necessarily work for me but it is certainly worth a try for 6 months at the very least.

I still have a lot of research to do to get my head around this new diet but he wrote out loads of recommendations so I know what to look for, I found him to be very helpful.

I have already received his full report, he had it emailled to me within 2 days, by the Monday after the appointment on Saturday, I thought that was very smooth and professional.

14:00pm: Finish appointment and get Taxi to the Hotel.
14:35pm: Check in and unpack and relax for a few hours to recover from the morning.
14:55pm: Pass out for around 2 hours
17:00pm: Wake up and go get some food
17:15pm: Make our way to the food plaza across from our hotel and find a sushi place

17:30pm: Too tired to deal with crowds so decide to bring sushi back to the hotel to enjoy in peace. Then just relax watching TV for the rest of the evening as we were both wrecked and I was beginning to feel really poorly after the busy day. I did ok though but we didn’t get much sleep as there was a Hen party in the room next door to us so it was really noisy at times but either way we got through the night and were up bright and early the next morning, Though we were both impossibly tired and I was barely able to move!

We get up, shower and get ready, check out of the hotel and get a Taxi to Paddington again to get the HeathrowExpress train into Heathrow Terminal 2 to catch the plane.
We grab breakfast and all goes as normal through security and onto the flight.

I always laugh at the sheer difference between the security in Heathrow compared to Shannon, Shannon are so lazy about everything and you literally walk straight through without little hassle but in Heathrow they want to examine every inch of you and your bag, which is great that they are so thorough but the difference in the two always makes me giggle.

Either way we got home safe, landed, went to collect our dog from my parents house and hit for home where we both crashed and burned pretty hard! I know right, just one day and were done, useless we are! I felt incredibly sick and my husband caught a flu on our travels so he has been hit pretty hard too since coming back. We both still haven’t recovered properly!

Next up now is to make sure my doctors and consultants here get a copy of the report he has sent me and to start a food plan to get this diet started once and for all. I am still following the Low Fodmap diet until I have everything I need to start this new Low Histamine diet.

I am looking forward to the adventure over the next 6 months or so with this new lifestyle change, and of course I will share it with all of you as I go along!

Thank you once again to everyone who made this trip possible, John Steele and Mick Dolan for organising the Bowie Gig in February which raised €2000 each for both Zondra Meaney and myself and also to everyone who contributed through my Go Fund Me Page. I am deeply appreciative to all  of you for your help and support, thank you.

Lette (Fainting Goat!) xxx

London Update Soon!

Just back from London after meeting with Prof. Qasim Aziz Neurogastroenterologist who specialises in EDS. It went super well and I am delighted with what he had to say to me but I am feeling so very ill after traveling (I know it was only one night but I’m not able!) I will get to the full update shortly.
Just wanted to let you know it’s on it’s way I just need a little rest for a few days, Ill get to it! 🙂

Cheers Folks,

Lette (Fainting Goat!)

Saturday Submissions – With Stephanie Baxter

I know, I know! I am late with this again, I am so sorry, I just couldn’t get to the computer the last few days because of the health once again. I will have to do them during the week and have them publish automatically on the Saturday morning. I will do better, I promise!

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In this weeks Saturday Submissions, we speak to a good friend of mine that I know through Facebook as ‘Tuffy’, She has a host of chronic illnesses and this is the first ever telling of her own story. So lets hear it for Tuffy and give her a warm welcome to the world of Blogging! 🙂

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Saturday Submissions With Stephanie Baxter

I’ve never told my story before because it’s weird and I’ve ended up with a bunch of rare things. People tend to get either bored or uncomfortable with the full version. I’m having to come up with some creative reasons why I’m in my wheelchair.
I’ve summed up with a Sword fight. I don’t get such a fun reaction. I’m thinking of changing it!

Anyway, I’m an old lady (48) But I’ve had issues with my heart palpation since I was 17 or so. When I was 20 I was pregnant with my first kid. The doctors wouldn’t listen to me. The palpations were so bad anywhere I would go I would have to stop everything for about a minute. Only because my heart was beating so fast and hard. Talk about a massive head rush! But I was also told they were side effects of pregnancy.

So, after a few years and another kid (I really was terrified of dying during birth) everyone around me told me I was fine & if the doctor wasn’t worried, why should I be? Ok First Lesson people!! If it’s your body and Your scared, Start Screaming for Anyone to listen!!

I put up with this for 10 Years before I Finally was diagnosed. I had to get a blood clot first, But hey, your body has to do what it Needs to do. So, I’m 27 years old and finally I’m seeing a Cardiologist. I told him that my heart goes super fast. He asked me if he could check it out. I thought, heck why not. It’s probably nothing.. Wrong Answer!! I’ve got stickers all over my chest and this readout starts printing and the Doctor gets All excited!!!

OK, Lesson number 2, When a Doctor gets Excited, be Scared.. it’s Not good News! I have an inherited disease called (WPW ) Wolff Parkinson White. My electrical pathways were kinda not working right. So it was (is) making my heart palpate.

The doctor told me I was in the 10% of the population, oh and I needed an ablation right away or I can go into a heart attack and die. Yeah, my inner voice yelled at me for listening to all those Stupid people!! Who in the end, didn’t really give a crap.

As I said, listen to yourself… so, I went in for my first ablation. Well, it ended up 2 of them because the first one didn’t quite take. After about 2 or 3 years I started taking Hawthorne supplement. Because my palpations started to come back.

Then after a few more years and a Great deal of stress I was Finally diagnosed with Pots and the WPW came Roaring back.

Now just so we all know, my paternal grandfather had wpw, they didn’t have a name for it in the 2nd war, he would be driving his supply truck in Germany and a bomb went off, he just ended up in the ditch with “heart attacks”. Which is what they were. But there was nothing they could do for him.

Personally it really sucks! Plus the pain is right Nasty. Chest pain and all. Back to me, I got to play with beta blockers & calcium Channel blockers to keep my heart under control, it just ended up confusing my heart, it was up to 300 then it would drop to 30 in just a few seconds. Thus me checking on the floor making sure it wasn’t lonely. I Never did get to pass out, but ya know.. I’m a blonde asthmatic dyslexic.. why add on to that??

The doctors got mightily concerned and decided I needed a pacemaker. My first. Wow, I got to name him. Something fancy, so I came up with Engleburt Humperdink! (You young ones look him up) it fit great!! I went in & as the doctors who have been putting in pacemakers for Decades, they put in the first lead.. that went smoothly it was the upper lead they had major issues, my heart took off and I’ve Never seen 2 Cardiologist freak out before. They couldn’t slow down my heart for anything. They never had this happen before. I suppose they finally found the relaxant. Yeah, it’s a fun story. They stapled me together and within 6 months I had to go in for another ablation.

They made me stay awake. All together in 10 years I’ve had 9 ablations. Yes, they made me stay awake during all of them (the first 2 were exception) as I’ve said I’m Really rare and different. I felt every ablation, just as I can feel my heart go into tachycardia. The last ablation they tried to make me completely dependent on my pacemaker. They were only 95% my heart still goes off but now only for a limited time. Few seconds here and there. Nothing like it did. Now I’m dealing with the pots.

But I found out more family info. My mother had the same thing, so does my niece’s (2) so now I’m finding out its genetic. When it’s genetic the symptoms are severe. Where I Live, I was told that all they can do is just treat the symptoms. I’m getting new symptoms and they are not pretty. So, we moved to a new state for better medical care. My timing couldn’t be worse, Spring is kicking me around like I’m it’s new punching bag. Being bed bound is hard enough, but now we’ve got to find another place to live and paperwork to do plus finding doctors that might just care.

If your wondering, I found Irish Dysautonomia back when I was around 30ish. A Long Time ago!! I found you guys on YouTube. It was the first time I was introduced to what the Crap I really do have. I’m thankful for the support and information that I’ve found. It’s very personal and individual in its attacks.

I’m also bipolar 2. So I’m on a few meds right now. Fludicourt for my blood pressure is the main thing, but then I’m finding out that anxiety is a symptom as well. Which having bi-polar 2 & ptsd Really makes me realize how severe this crap is. I’m very open about my mental health as well as my physical health. I’m one person, why separate? If my stress (anxiety) is affecting my heart why treat my mind and my heart seperate?

So, I’m really big on coping strategies. They Really do help. Anyway, I’m around sometimes on Facebook my name is Tuffy Baxter, I would like to be on Facebook a lot more, but it’s difficult.

Thank you for reading this blog. It is my first at telling this story. I hope if anything helped give a smile or 2. I suppose I shall see you all soon in the funnys!! 😍😍😍

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Thanks hugely to Tuffy for that Blog post, please be sure to check her out on Facebook and make a link and please leave a comment below if you relate to Tuffy’s post 🙂

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

 

Saturday Submissions – With Dr. Liam Farrell

It’s a day late, I know, I know, I’m sorry – (It will be worth it, promise!) I haven’t been well in the last few weeks, I completely forgot all about Saturday Submissions last week and then I do it a day late this week, oh dear! I can do better than this, surely!!

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This week I speak to Dr. Liam Farrell, yes, a real doctor, or at least used to be a family GP, now better known as an award winning columnist and broadcaster. You can find Liam over on Twitter as @drlfarrell.

 

Why presentations are best served rare

We are doctors; we do terrible things to people. They come into the surgery like healthy folk and go out as patients. If they’re really unlucky we confine them to an institution where the occupants are routinely left immobile, deprived of sleep, fed a diet that is tasteless and nutritionally marginal, and experience the de-humanizing indignity of being half-naked all the time.

‏The average age of a patient in general practice is 75 years old.. Many have multiple diagnoses, and their care is incredibly complex, and above all requires more of our time. But our time is in increasingly short supply, so much of it wasted on the worried well and on health promotion. If we reckon on 15 mins per consultation, a family doctor with 2500 patients would spend 7.4 hours per day to deliver all recommended preventive care and 10.6 hrs per day to deliver all recommended chronic care.

‏This leaves a generous 6 hours every day for those pesky acutely ill patients, sick certs, insurance and passport and DLA forms, paperwork, eating, sleeping, banging our heads against the wall in sheer frustration, toileting and reproducing. But what is never understood, by patients, the general public, the media, bureaucrats, managers or politicians, is the huge numbers of people family doctors see who aren’t sick, and who have nothing wrong with them; this really can’t be comprehended unless you sit in with a family doctor for a whole surgery. A huge part of our job is telling people what they don’t have. Unfortunately, ‘nothing wrong with you’ is a retrospective diagnosis and can only be made after the consultation.

As the threshold for attending healthcare services grows ever lower, there are more and more worried well, too much screening and over-treatment. It becomes harder and harder to pick out the really sick person from amongst the ranks of the worried well; when you are looking for a needle in a haystack, the last thing you need is more hay. There is consequently not enough time and resources to the really sick; so everyone loses, especially those with hard to recognise rare diseases.

As The Fat Man said in The House of God, when a medical student hears hoof-beats outside a window, he thinks it’s a zebra.

Which might be true, of course, in certain circumstances – if you were in practice in the Serengeti, for example (curiously, I was once in the Serengeti, heard hoof-beats outside my window, peered through the early morning mist and saw only an old cow).
A medical axiom used to be that common things are common and uncommon presentations of common diseases are more common than common presentations of uncommon diseases. But this is now known to be misleading. Taken all together, rare diseases, and rare variants of common diseases, are not uncommon. And diagnosing rare diseases is very difficult; it’s not as if there is a are disease specialist we can refer patients to.

I do have some hard-earned experience. As an intern, I saw a young lad in casualty. He had fainted at a disco (yes, it was that long ago, Saturday Night Fever was quite fashionable. Old age is creeping up on me, not sure why but fairly sure it’s up to no good) and he had a few unusual skin lesions and a labile BP.

These days, I doubt if I would be able to recognise a phaeochromocytoma ( a rare tumour of the adrenal glands) if one walked up and assaulted me with a blunt speculum (I’ve been flogged into apathy by too many URTIs and sick certs, rare and interesting diseases only present to other doctors), but I was young then, fresh and sharp and so hip, I could hardly see over my pelvis.

I wrote ‘possible neurofibromatosis?’, ‘possible phaeo?’ on the chart and admitted the young man to the ward. I was too green to realise the importance of hoarding unusual cases to myself, for my own advancement, and sure enough, the rumour spread around the hospital as fast as an epidemic of flaming gonorrhoea.

Later, when I went to check up on my patient, I found him buried under a tide of medical students, SHOs and research registrars, all keen for a piece of the glory, all ordering 24-hour urines, all dreaming of a case report for the peer-reviewed journals and another notch on their CVs.

‘Help me, doc,’ he said, desperately, ‘they’re suffocating me.’ I whipped away the students, but the others were far above me in the hierarchy and I could offer little succour.

‘Sorry, pal,’ I said. ‘It’s a common complication of uncommon diseases.’

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Thank you so very much to Liam for providing todays Saturday Submissions!
What did you think of his post?
Do you relate as a medical Zebra?

Please leave a comment and let Liam know what you think, be sure to check out his Twitter Link and make a new connection! 🙂

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) in relation to your chronic illness, or how a relation/friend/patient with an illness affects or interacts with you, etc. all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like just be sure to put your details in the email so I can respond to you personally 🙂

You can send your submissions to: irishpotsies@gmail.com

Saturday Submissions – With Evie from The Zebra Mom

I’m Evie and I come from Cork, Ireland. I’m a 29-year-old mother of two baby zebras. Alex is 7 and Olivia is almost 2. I am diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), Orthostatic Intolerance and Vasovagal Syncope. I first heard of EDS after interviewing a young woman with EDS for the paper I used to work for. Something about this woman’s story stirred something inside me and I became passionate about raising awareness of the condition. A year later I was diagnosed with EDS. When I’m not blogging, looking after my two children or lying in bed ill, I help my husband run our wedding videography business and co-host a radio show on Saturday evenings from 7pm (Irish time) on www.clonlineradio.com.

evie blog

I write about Ehlers Danlos Syndrome an awful lot and with where I am guest posting today, I decided to focus on Dysautonomia. I recently wrote A Simple Guide to EDS on my own blog so now I’m going to write A Simple Guide to Dysautonomia. I hope that this blog will help people to understand the complexity of Dysautonomia; if they are newly diagnosed or want to help their loved ones understand. I have omitted a lot of medical jargon and used easy to understand language so this can also be accessible to young people.

POTS-for-dummies

What is Dysautonomia (DIS AUTO NOMIA)?

The Autonomic System is the system in the body responsible for every automatic thing your body does. It is responsible for the way you breathe, the way your heart beats, the way your blood pumps around your body, the way you digest your food and even the way your contractions work in child birth. The Autonomic System is very important.

So, when your Autonomic System doesn’t work correctly this is known as Dysautonomia. Dys simply means “bad”, “ill” or “abnormal”. Dysautonomia is a general term for any condition that disrupts any aspect of the autonomic system.

What causes Dysautonomia?

This is a complicated question. There are many, many reasons why Dysautonomia occurs. It can be the result of other conditions, for example it is believed that Ehlers Danlos Syndrome (AY-LERZ-DAN-LOSS-SIN-DROME) is responsible for Dysautonomia in some patients but that hasn’t been officially confirmed. It can be induced in pregnancy, can be inherited or can occur when the autonomic system has been damaged. Even being deficient in certain vitamins can trigger Dysautonomia.

How does Dysautonomia affect people?

Depending on the type of Dysautonomia you have, the symptoms vary. One of the most common types of Dysautonomia is Postural Orthostatic Tachycardia Syndrome. That’s a mouthful, right? Most people just call it POTS for short.

POTS basically means that when you are in an upright position your heart beats faster than it should (at least 30 beats faster than when a person is lying down or sitting). This can make people feel very ill. POTS can cause people to faint when they’re upright or exercising, they can also get very bad headaches, have chronic fatigue (being tired all the time) or find it difficult to sleep. A big sign of POTS is red or blue coloured skin in the legs and feet when they’re standing or sitting. This shows that their blood is having trouble pumping around their body and is gathering in the legs and feet. This is often the reason why people get dizzy and faint.

Another common type of Dysautonomia is Orthostatic Intolerance (OI).  OI means in the simplest term that your body does not like being upright. Almost like you’re allergic to standing up. Some people with POTS also have OI. The symptoms of OI include palpitations (your heart pounding very hard), light-headedness, chest pain, trouble breathing, nausea, brain fog (trouble thinking or speaking coherently) and fainting.

Exercise, heat, alcohol or even eating a large meal can bring on symptoms of these conditions.

Other types of Dysautonomia include Vasovagal Syncope and Neurocardiogenic Sycope (NCS). These conditions also display similar symptoms.

How is Dysautonomia diagnosed?

If you’re experiencing symptoms of Dysautonomia, the first port of call is to discuss your symptoms with your doctor. Unfortunately, medical professionals fob off quite a lot of people. Patients are told they just need to get more sleep or exercise more.

If you do think you may have Dysautonomia, do suggest the possibility to your doctor. Like any other human, they won’t be able to remember everything they learned in college. You may just see a light bulb going off, and find that your doctor is suddenly able to help. Once a doctor focuses on the possibility, they should take a detailed medical history and perform a careful physical exam.

If your doctor is unwilling to take the possibility of Dysautonomia seriously, consider seeing another doctor. Patients lucky enough to be taken seriously by their family doctors are likely to be referred to a specialist.

The type of specialist you will be referred to usually depend on the predominant symptom they are experiencing. The specialist will then decide on what tests you need and then come up with a plan to help you treat and manage your symptoms.

Can you tell someone has Dysautonomia just by looking at them?

No. Dysautonomia is considered to be an invisible condition. Even though you can’t see it, it still exists. It is a disability and should be treated like any other visible disability. To a trained eye, Dysautonomic signs can be spotted like the pooling in the legs and feet like we discussed earlier.

Can Dysautonomia kill people?

Generally? No. There is a type of Dysautonomia called Multiple System Atrophy (MSA) that is fatal. It has symptoms vey similar to Parkinson’s disease, but has quicker progression. People with MSA are rare and the condition usually occurs in adults over the age of 40. The cause of MSA is unknown, and no cure or treatment slows the disease.

But generally, unless you fainted and hit your head or fell from a height, you won’t die from your symptoms. However, many people have a very poor quality of life due to the severity of their condition.

What treatments are available for people with Dysautonomia?

Luckily, most people can manage their symptoms with prescription medications given by their doctor.  A common medicine known as a vasoconstrictor can stop the heart beating too fast and the blood pressure dropping too low. While these medications can help relieve the symptoms of the heart problems, it does not solve the underlying issue causing Dysautonomia. Sometimes medications can make things worse or cause new symptoms.

Dysautonomia is generally considered a progressive disease, which means it gets worse over time. When the Autonomic Nervous System becomes unregulated it can begin causing damage to the organs. For example, some people suffer from a condition called Gastroparesis (GAS-TRO-PAR-EE-SISS). This causes the stomach and intestines to become paralysed. This means food often sits in the stomach and digestive system for too long. This means that people with the condition can be very ill. Some of them even need to be fed with a tube. This is why early diagnosis is important.

Treating Dysautonomic symptoms can be very tricky because there can be a huge range of symptoms. Some people will have to take different types of medications to treat all the different symptoms.

Luckily, there are some new treatments becoming available but they can be difficult to access, especially in Ireland where there are no Dysautonomia specific specialists or clinics.

I know someone with Dysautonomia who uses a wheelchair. Do all people with Dysautonomia need wheelchairs?

No. Not everyone who suffers from Dysautonomia needs to use a wheelchair. Some people have symptoms so bad that they need to use the wheelchair for their own safety just in case they faint and hurt themselves. Other people use wheelchairs sometimes when they are having a bad day with their symptoms. Some people with Dysautonomia have other conditions like EDS which means they have even more trouble with their body like chronic pain (pain all the time) or they are susceptible to dislocations (their joints pop out of their sockets). They may need the wheelchair to get around.

Some people don’t use wheelchairs at all; they may use a stick or not use anything at all. It varies from person to person.

Can you catch Dysautonomia?

No.  Dysautonomia is not contagious. If you know somebody with Dysautonomia, don’t be afraid, you’re not going to catch anything from him or her. So, if you’re avoiding someone with a type of Dysautonomia, go make friends with him or her.

How can I help someone with Dysautonomia?

Be there to listen if they want to talk about it. Some people are afraid to tell you how they feel because they think friends and family don’t want to hear them complain. Ask them how they are and if you can do anything to help them. Doing shopping or household chores can be a huge help and it would be most appreciated. If you’re friend or family member has Dysautonomia and can’t access appropriate treatment like here in Ireland, write to your local representatives to tell them about Dysautonomia and the lack of care that is available. Help raise awareness in the public by sharing articles or pictures about Dysautonomia. Dysautonomic conditions are incredibly under diagnosed and many of the tests needed to diagnose some of the conditions are not available here in Ireland.

If someone with a type of Dysautonomia that makes them faint collapses in front of you:

– position them on their back. If the person is breathing restore blood flow to the brain by raising their legs above the heart level. Loosen anything they are wearing that might be tight or restrictive. Usually someone with a fainting disorder will come to without any further problems. Give them a glass of water and when they’re ready, help them up slowly. If they are not ready to get up, sit or lie down with them.

young man who loses consciousness

It can be embarrassing to faint sometimes so it’s nice to have someone lie down and chat with you to make you feel better. Fainting can be very disorientating and the person may also be sore so let them rest. If you’re worried that they may have broken something or banged their head hard, take them to the hospital or out of hours doctor to get checked out.  If the person does not come to, starts seizing or stops breathing call 999 or 112.-

Well, I hope that I’ve explained Dysautonomia in an accessible way and that it is worthy of a share.
 
You can find more of my blogs on my own website, The Zebra Mom  You can also follow me on Facebook, Twitter, Instagram, Pinterest and Snapchat (evienevin87).

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Thanks so very much to Evie from The Zebra Mom for doing a Saturday Submissions blog for us and a very appropriate post it is too. Do you have any further questions in relation to Dysautonomia for Evie or myself? Please leave a comment below and tell us what you think!

——— Wanna Be Part of Saturday Submissions?———-

All you have to do is tell us a little about yourself and write a blog post in relation to your chronic illness, all welcome!

You can include photos (preferably your own, if found online be sure to add links to where you found them)

Be sure to add links to your social media accounts so people can link back to you OR You can write it anonymously if you like 🙂

You can send your submissions to: irishpotsies@gmail.com

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