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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Low Histamine Diet For MCAS and Gastro Related Issues

Food

 

I am so so sorry, It has been months and months since I wrote in this blog but I thought what better way to start back into it than writing about something that has helped me almost miraculously in the last year.

The Low Histamine Diet. 

Last March (2017) I went to London to go to an appointment with the renowned Prof Qasim Aziz for serious gut related problems and weight loss stemming from my EDS. You can read all about that trip Here and you can read Prof. Aziz’s medical report and related advice from my visit Here.

My symptoms included serious weightloss (3.5stone) in a short period of time and strong constant bedridding nausea and vomiting that I was getting multiple times a day as well as excruciating gut pain which my doctors thought was stemming from the gallbladder and were considering operating on it before I traveled over and started Aziz’s amazing advice!

His recommendations then were as follows:

  1. Slowly reduce Opioids as they are slowing gut function. Stop, Reduce and increase some medications as explained during the appointment.
  2. For small intestinal bacterial overgrowth I have suggested a prescribed antibiotic twice a day for 2 weeks following which she should take a probiotic.

  3. I would suggest that she sees a senior pain management specialist locally to consider splanchnic nerve blocks but it may also be helpful for her to have a spinal MRI of the thoraco-lumbar spine to make sure that there is no nerve root pressure.

  4. I have given her detailed dietary advice and have generally suggested a diet low in sugar and grains but high in white meat, vegetables and healthy fat such as olive oil. Overall I have also suggested that she should reduce the histamine content of the foods that she eats and have suggested some resources that she can look at. I have also suggested Calorific drinks, vitamins and minerals such as vitamin C, B complex, omega 3 and chelated magnesium.

As soon as I got home I started the diet and calorie drinks straight away, I sorted the antibiotic and supplements a few weeks later but within 3 days of starting the diet I noticed huge improvements already so I was very hopeful!

It has now been just over a year on this diet and though I was only supposed to try it for 6 months I found that every time I reintroduced foods back into my diet that symptoms would start back up again so I have just stayed on it! It suits me and I don’t find it very hard.

So… Has it helped?

The answer is a resounding YES!

All my worst symptoms have actually gone, no exaggeration, My nausea and vomiting is now completely controlled, the severe pain I was getting in my gut that my doctors thought was all the gallbladders fault, is GONE! Actually gone, no more gut pain that had landed me in hospital multiple times, gone! It is just bliss!
My weight has maintained over the last 5 months at 52kg with is fantastic, no more constant weight loss!

As for my other symptoms? Yes they have improved no end too, though I still get dizzy I am nowhere near as bad as I was at my worst! I am so so happy it has worked for me, I can not recommend this diet enough. Though I will always advise that if you are starting any new diet or supplements etc. be sure to run it by your doctor first to be sure it will suit you!

So… How does the diet work?

It works by reducing inflammatory allergens that can make your digestive system swell and get raw as well as not function properly.

Find the diet plan that I follow Here.
How you follow it is as follows:
Anything that is a 0, you can eat as much of as you like!
Limit anything that is a 1,
and outright avoid anything that is a 2 or 3!

That is it! That is as complicated as it gets!!

The diet is restrictive enough that there are few grains, no sugar, no alcohol, no chocolate (Except some white), no tomatoes, no raspberries, no strawberries, no red meat except beef, nothing that will ferment in your gut to name but a tiny few.

However how successful it has been for me means that this restrictiveness is so worth all of it! I don’t find the diet hard at all and I find I am still getting plenty of calories daily.

It really has been life changing for me. It was designed specifically for people with MCAD so those of you who have MCAD or who think you may have it like me (Aziz thinks I may have it) or if you have Dysautonomia or EDS then this diet is for you!

As always get advice from your doctor before you start anything new, everyone is different and what may suit me may not work for you but if you have any questions about this diet, I will be delighted to answer them based on my own experiences from the last year on it.

That is all for now, chat again soon folks 🙂

New Robot Ears!

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So on Monday this week I finally got fitted for my new hearing aids, they are a pair of Phonak Nathos S+ aids with moulds to fit my ears and programmed for my hearing loss which the lady said was in the region of 100db of a loss in both ears which is huge I thought and a dis-improvement on my last tests which were far too long ago!

I have only worn them for a couple of days now and I find them excellent! The sound is powerful and natural enough sounding. They are not heavy in my ears though they feel slightly heavier than my last aids but not by much.

The moulds are silicone and softer than my last ones but a slightly tighter fit so take a little getting used to as after wearing them all day yesterday I found they hurt the ears just a tiny bit, more like got tired from wearing them all day. Once taking them out though my ears felt like normal again so its just a matter of getting used to them I think.

The hearing aids have little musical earcons when they turn on, which is pleasant to hear and when you use the volume switch they make more earcons to tell you when you have gotten to the highest or lowest level it will give you a slightly different earcon but it is all very intuitive.

The best thing about them is they are programmed to work together, so if I change the volume in one of the aids, they sync and the other aid will adjust the level to the same as the aid you have adjusted so it saves you having to change the volume on both ears.

Thats about the brunt of them I think, I was called to the consultants appointment in the University Hospital Limerick on the 6th of June where I was given an in depth hearing test and referred to the hearing aid clinic. Then within a month I got another appointment for The Hearing Aid Clinic for the 30th August for another hearing test and fitted for the moulds, then I was called back there within the month again for the 9th of October to actually pick them up, get them fitted and programmed so that was nice and quick really.

 

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I had my last pair of hearing aids for over a decade! They were a pair of Oticon GB50’s analog aids and they were my daily ears for years! They were in dire need of an upgrade at this stage! The moulds and tubing had yellowed and hardened and the sound wasnt powerful enough for my hearing loss as it has gotten so much worse over the last few years so the upgrade was badly needed.

I wrote before about my hearing loss, underdeveloped Eustachian tubes and middle ear disease, which has lead to 12 operations on my ears, you can read all about that here.

I have often wondered if all this hearing loss is EDS related as I have had hearing problems all my life since I was born, much like the EDS so I have to ask if they are connected, I am only curious on this as there is no proof to say that they are linked at all. However from reading many forums and pages online it seems some hearing loss can be attributed to EDS but it is not definite only anecdotally.

Still an interesting question though.
Have YOU EDS?
Do YOU have any sort of hearing loss or ear problems?

Please let me know in the comments below, I would love to hear about this from more people, just out of curiosity!

Thank you for reading folks, back soon with more news!

Lette (The Fainting Goat!)

 

Woo! Shortlisted for The V By Very Blog Awards Ireland 2017

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I am delighted to announce that I just got an email from V by Very Blog Awards Ireland 2017 and Irish Dysautonomia Awareness, this humble bloggie, has made the Shortlist for 2017.

We are now onto the next round ‘The Finalists’ where the blog will be judged on:

  • How engaging, entertaining and informative is your writing?

  • How consistent is your blog? Is every nook and cranny taken care of?

  • How do you compare to other blogs? What makes you unique and stand out?

     

I just want to take this opportunity to firstly thank everyone who put the blog forward in the first place and also thank you to the judges who deemed the blog good enough to make it this far this year, I am delighted.

Thank you all once again and here’s to the next round!

 

Lette (The Fainting Goat)

 

 

 

Longlisted in The ‘V by Very’ Blog Awards Ireland 2017

V for Very Blog Awards 2017_Judging Round Button_Longlist

YEAYYYY!!! This humble little bloggie has been Longlisted in the ‘V by Very’ Blog Awards Ireland this year under the Health and Wellness category, THANK YOU ALL SO MUCH for voting and putting this blog through for this round, I hugely appreciate it, thank you!!

Next comes Round 2 the Shortlistings where the blog shall be judged on:

Overall Blog Design
The Reading Experience
The Knowledge of the Writer
How Responsive it is on PC, Mobile and Tablet

hopefully we shall make it, here’s hoping!! Fingers and toes crossed!!

Thank you all once again ❤

Lette (Fainting Goat)

 

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 🙂

Saturday Submissions – With MeggioMum

Todays Saturday Submissions is brought to you by MeggioMum A.K.A Heather, who lives with Pots and EDS, be sure to check out her wonderful blog about ‘Two cents from a Midwest Mom’, HERE.

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Potsy Mamas: What We’re Hiding

No, I’m not talking about marijuana, though that would definitely be an interesting article. I’m actually talking about coping with chronic illness while raising a family. Perhaps you’ve heard of Disautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), or Ehlers-Danlos Syndrome. Perhaps you haven’t. But these conditions are very real, and being a mom of four (soon to be five) while living with them is a surreal experience full of both suffering and beauty.

Imagine for a moment that, like every mother on the planet, you have more things to do in a day than are physically possible to accomplish. Now imagine trying to tackle that when your body feels heavy like you’re wading through thick mud, and coffee only makes the feeling worse. You’re exhausted like you’ve just run a marathon… ALL THE TIME. Walking up the stairs is like mountain climbing without oxygen. You have to constantly write yourself notes and set alarms on your phone because your memory is swiss cheese. Complex situations are overwhelming because your brain is in a fog, like when you first wake up in the morning, except it never goes away. The mere act of standing makes your heart jump in your throat, and the smallest movements can dislocate a rib or hyperextend a knee. And you are in significant pain every waking moment.

What happens when you live like this every day is both heartbreaking and inspiring. A series of things start to unfold. The first thing to go is your house. Dishes and laundry pile up, as does random clutter everywhere. You forget to clean the cat box and don’t have the energy to mow the lawn. Your house starts to look like an episode of Hoarders and you’re too ashamed to invite people over or even let your kid’s friends inside to play.

Then goes your self esteem. You blame yourself for all the things you know you should be doing. You feel lazy and worthless. Thoughts creep into your mind like “I’m not trying hard enough”  “I’m such a burden” and “My family must be so disappointed in me.” You curse your body for not working right, and feel resentment towards both yourself and towards healthy people who live more mainstream lives. Your marriage suffers, both physically and emotionally, and you start to tell yourself that your spouse would be happier without you.

The guilt and self-blame are the worst when it comes to your children. You want to give them the world, and instead they don’t even bother to ask if you’ll take them to the park because they know that pained look in your eye all too well. You teach your children to be self-sufficient and independent; more out of necessity than anything else. You are proud that your teens can cook dinner, wash their own clothes, and fix their own bikes. You love how your younger kids can quietly entertain themselves outside in the fresh air without you hovering over them. But you also know that their childhood is flying by at lightning speed while you’re laying in bed trying not to throw up.

Then comes the judgement squad. Doctors not familiar with your condition, random people on the street, your kid’s teachers, coworkers, sometimes even your own family members. Everyone has an opinion on how severe your illness is and how you should be handling it. A lot of people don’t even believe your condition is real because you look “normal” on the outside. Your slurred speech and shaky movements means you sometimes get mistaken for an alcoholic or drug addict, and then treated with open disdain and discrimination.

Some people will be sympathetic, but insist you’ll be cured if you would just take more ginseng, or stop eating gluten, or do more yoga. My personal favorite is when they tell you to think positive and visualize yourself healthy.

I am a strong believer in homeopathy, clean eating, healthy exercise, and so on. But none of these things are magic cures that will stabilize the blood flow to my brain and keep my joints from dislocating. None of these things will keep my autonomic nervous system from misfiring like an electrical short. This is what leads to the final stage: the mask.

You start hiding your condition as best you can from the world. You grit your teeth and smile through the dislocations and spasms. When someone asks what’s wrong, you tell them you’re “just a little tired” instead of telling the truth. People get tired of hearing about your symptoms and start to tune you out. You avoid social interaction as much as possible, and start lying to cover up for it. (“Oh I’m sorry I missed the meeting, I had a flat tire”). You completely shut down in stressful situations because everyday life is already stressful enough, and you just can’t bear any more. You decide it is so much easier to put on the normal facade than wasting energy trying to make everyone understand. (Because 80% of them never will.)

I am trapped inside this body like a butterfly in a cocoon, except I don’t get to break free and fly.

There is an odd beauty to it though. This purgatory of inbetween health- not sick enough to be disabled, but not healthy enough to be normal- is like slowing down and living your life in stop motion. You learn to appreciate tiny moments like the sun warming your skin, the crinkle of smile in your daughter’s eyes, the earthy flavor of a hot cup of tea. You appreciate the people who stick by your side, and love them fiercely for it. You learn to let go of the things that don’t matter; like messy hair,  dirty kids, and judgemental people. You learn to slow down and just breathe.

We are moms (and dads) worth knowing.

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Thanks so much to Heather for submitting this post today, does this relate to you? How do you find juggling parenting and family life with chronic illness? If you relate, please leave a comment or consider following the directions below and submitting your own post to share!

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

All you have to do is tell us a little about yourself and write a blog post (Any word count) 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