We Met On the Internet

Once upon a time, meeting this way was considered scandalous, even dangerous!  But, just as the early days of internet dating required certain intrepid desperation; my own desperation sent me online in search of people like me. It is so easy to feel isolated when you have an odd illness.  And when the illness carries on for years that loneliness looks for others.  Here is how I found the rare birds in New Zealand who are like me…

When I was first diagnosed, Dysautonomia is not the name I was given for what was wrong with me. Back then, I was mostly having problems with dizziness and fainting, things were to progress but I didn’t know that then.  Investigations showed that my heart was stopping, so they put in a pacemaker.  I was told there were very few people with my particular problem in New Zealand.  When I asked if I could get in contact with the ‘very few’ I was told that privacy laws prevented me from having their contact details. Which is perfectly logical, but not helpful.  It sounded like a job for the internet.

Let me explain a little first, about my odd condition. Dysautonomia is an umbrella term used to describe several different medical conditions  which all feature autonomic nervous system dysfunction.  The autonomic nervous system controls the ‘automatic’ functions of the body that we don’t think about.  Pupil constriction, tears, saliva, heart rate, blood pressure, digestion, bladder and bowel function, temperature regulation and the body’s ability to compensate for changes in posture.  Patients often feel dizzy and nauseous. They may not sweat properly, be able to pee and poop normally. Headaches can be a feature.  Fast and slow heart rates, labile blood pressure. They can experience brain fog and horrible pain related to various dysfunctional aspects of their autonomic function.  All the while looking perfectly normal.

Our bodies themselves are usually structurally fine; it is the dysfunctional nerve conduction that creates our problems. Our bloodwork and other tests can be fine. Yet we are not. Dysautonomia is often referred to as an ‘Invisible’ illness because it is hard to see the debilitating effects by looking at a person’s appearance.  Spend some time in the company of someone with Dysautonomia and you will see that it isn’t really invisible at all.  Our quality of life has been compared in the literature to patients with congestive heart failure. Functional disability is often a feature of patient’s experience. In short, Dysautonomia is really hard to diagnose and really hard to live with.  We all wish that more people understood that. We run marathons every day, just doing simple daily tasks.   And before we even got to this stage, we ran the marathon of searching for answers to our medical oddities.

Patients with Dysautonomia typically wait years for diagnosis, often suffering wrong diagnoses and medications along the way.

In my early search to understand more about my condition, treatment options and prognosis, I looked for medical information and support groups online.  Even my doctors couldn’t help me with more information. I was desperate to know more, to connect with others like me. People choose whether they want to be online, so my chances of meeting others like me who would want to meet in person was much better. To start with, the groups were all American. Then, occasionally a new Australian member would appear.  I posted messages, I scoured the boards, but New Zealanders were nowhere to be found.  Years passed and I gave up looking online for people like me.  It was too disheartening.

Then, a neurologist explained that I had Pandysautonomia.  It is a rarer, widespread, progressive form of Dysautonomia, the cause is still unknown.  There is no cure without a cause so the symptoms are treated as they occur.  The medication and treatment regime can be almost as debilitating as the condition itself. Armed with a new name for what was wrong with me, I hit the internet again.  The neurologist said he knew of one other patient like me, in Wellington. I was determined to find her.

How much the internet had sprouted in the time I had been absent! There was a new, large not-for-profit organisation in the States, raising  awareness, funding research and hosting conferences for people with Autonomic Dysfunction.  They pointed me in the direction of a popular Australian Dysautonomia blogger.  She pointed me in the direction of and Australian/New Zealand support group.  And there, at last, I found my ‘birds of a feather’.

There were already Aucklanders there!  And the girl I had heard about from Wellington! I was beyond surprised!  I cried. As nice as it is to wave across the digital divide to one another, it’s all kinds of wonderful to meet up.  I’ll never forget our first time. The relief of being around people who really got it! I talked so fast I could barely get a breath in. We laughed. We shared stories of doctors, discussed the differences in our treatment plans. We call ourselves ‘The Horizontalists’, because our meetings are usually in a park, lying on blankets and pillows. We commiserated with each other and our eye contact spoke volumes of unsaid words, unshed tears.  We continue to meet, our group has swollen in recent months as new patients are diagnosed and find us online.

Our kiwi group is 16 strong. Kathleen, Janette, Renee, Zen, Kirsty, Carolyn, Andrea, Sarah, Hailee, Rosie, Felicia, Hayley, Sarah, Rebecca, Rachel and little Emi (see a pattern there? 80% of people diagnosed with Dysautonomia are female). If there are more of you out there, shout out!  We’d love to find you.

Every person in that group is a crucial part of their family and friendship groups; each of them languishing with a diagnosis that lacks adequate research or effective treatment. Awareness is slowly increasing in the medical community, so diagnosis is more common now.  The thing is, the many forms of Dysautonomia is not as rare as you would think (more than 11 million people worldwide), but they are rarely diagnosed in New Zealand.  Some of the forms of Dysautonomia are Postural Orthostatic Tachycardia Syndrome, Multiple System Atrophy, Pure Autonomic Failure, Autoimmune Autonomic Ganglionopathy, Pandysautonomia & Familial Dysautonomia.

Finding others like me has brought me a community and comfort that is unparalleled.  But there is still so much to do. October is International Dysautonomia Awareness Month. It’s a tough gig pushing awareness when our numbers are so few.  We are generally too sick to do all the usual methods for getting the word out there.  But we are driven. We know that out there are more people like us, and people with autonomic problems which have yet to be diagnosed.  People struggling through each day, invisible in their communities, simply because no one knows about what they are going through. We really want to change that. Our community of patients might be small, but so is New Zealand.  We know our wider community will open their minds and hearts to people with invisible illness, as soon as they know we exist.

Dysautonomia = Dys (dysfunction) Autonomia (of the autonomic nervous system).
Dysautonomiacs = Regular people afflicted with this debilitating, sometimes invisible, chronic dysfunction of the autonomic nervous system.

Good sorts to meet on the internet.  🙂

 

October is(5)

 

A Medical Menagerie

 

This may be of interest to you if you also have Dysautonomia, Pandysautonomia or Seronegative Autoimmune Autonomic Ganglionopathy, or if you know someone who does.  If neither of those apply, please don’t feel obliged to read through.
I record below all of my medical weirdnesses because I know that people will find recognition here. I took a lot of comfort from learning that there were others like me when I first heard my diagnosis.  I have recorded all my symptoms because sometimes, something small can be a clue.  I am looking for answers and you might be too.

nb_-i-keep-this-list-here-for-others-looking-into-their-own-condition-i-am-now-well-but-what-you-see-below-is-how-things-were-for-me-before-i-went-into-remission

 

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Symptoms From Top to Toe:

Screen Shot 2014-05-26 at 4.32.54 pm‘Cognitive Fog’; memory issues, variable ability to concentrate, dizziness.
 These challenge my very identity.  I was smart and now thinking is much harder for me. Sometimes I sound like I’ve lost my marbles, my words get jumbled and my memory scrambled.  It’s distressing.  If I sound weird when I talk to you, it’s not that I am stupid.  I am just struggling.

Screen Shot 2014-05-26 at 4.32.54 pmI have trouble with vision sometimes, my eyes go into focal spasm.  My pupils are not always equal in size and sometimes they don’t adjust to the light properly.  My eyes are often dry.  Other times they stream and people think I am crying.  But it’s just my Dysautonomia (as moved as I am by whatever it was you just said)!

Screen Shot 2014-05-26 at 4.32.54 pmDizziness when I have a postural change has been my reality since I was eight. Sometimes I am dizzy even lying in bed and it feels like someone is slowly tilting my bed backwards in a full circle. It feels a bit like being in a raft on the ocean and I feel like I am going to fall off. Or I have a kind of up-and-down dizziness when I am just standing (like I’m bouncing internally), or presyncope when I bend over, or stand from squatting. My dizziness makes me feel unsteady on my feet and I bang into walls and doorframes. I always have to steady myself against something if I have to stand. I use a ‘shooting stick’ cane that has a seat so that if I need to sit quickly, I can. I can also use it to prop myself up.  Descending stairs is terrifying. Dizziness is never something you get used to. You learn to breathe through it, but your body always feels stressed during a dizzy episode.

Screen Shot 2014-05-26 at 4.32.54 pmThe inside of my mouth feels like after you’ve taken a big mouthful of hot soup.  That burnt tongue feeling? It is sometimes tender, dry and my gums are red and sore.

Screen Shot 2014-05-26 at 4.32.54 pmHeart issues are part of my scenery, managed mostly by my wonderful pacemaker.  I don’t take cardiac medicines anymore.  My heart rate ranges from the early thirties to the mid two hundreds. If my heart rate drops rapidly, my pacemaker kicks in.  I have had thousands of rate drop episodes since my pacemaker was inserted. I am grateful for it every day. My blood pressure can be very low, or very high, or somewhere in between.

Screen Shot 2014-05-26 at 4.32.54 pmMy stomach, digestive tract and bowel can miss important nerve messages that make them work.  This can result in a ‘pseudo obstruction’.  First, I get ‘post prandial bloating’; my tummy distends like a ten-month pregnancy.  Then, all tummy services are suspended  (so much for never having to be pregnant again)!  These days I wear forgiving clothes and I frequently get asked if I am expecting. When it is extremely bad, I make the trudge back in to hospital. It’s hideous; but my new normal is a bowel that doesn’t work without extreme inducement. I take ten various doses of laxative a day and also self administer enemas.  I hate this symptom most of all.

Screen Shot 2014-05-26 at 4.32.54 pmI am nauseous on and off all day and especially at night.  This is a side-effect of the medications which  produce peristalsis (intestinal squeezing).

Screen Shot 2014-05-26 at 4.32.54 pmMy bladder either retains urine and have to self-catheterise, or I am incontinent.  I have detrusor dysfunction, so emptying my bladder fully is tricky. Sometimes for brief and lovely periods, the pendulum passes through the middle of the arc and my bladder behaves like it used to.

Screen Shot 2014-05-26 at 4.32.54 pmMy body doesn’t regulate temperature properly.  Some parts of my body can’t sweat anymore, so other parts of my body overcompensate.  I struggle greatly with heat.  I don’t know how to dress for the conditions because my experience of them is not accurate.  In the past, I often over-dressed or under-dressed my children.  Now they are old enough to let me know if they need thermals and a jacket.  For me, it is always layers so I can try to manually adjust things from the outside in.

Screen Shot 2014-05-26 at 4.32.54 pmI get fasiculations in my muscles, in random places all over my body, sometimes these go on for a long time, other times it is just for minutes.  Sometimes, they are not there at all.

Screen Shot 2014-05-26 at 4.32.54 pmMy leg muscles are weak, so standing up from a seated position is hard.  I struggle going up and down stairs or uphill.  My left leg often burns.  I’ve been told this is nerve pain.  Sometimes I have a strange gait, it is tricky at these times to lift my feet properly.

Screen Shot 2014-05-26 at 4.32.54 pmI have pins and needles and burning sensations in my feet and hands, known as peripheral neuropathy.  We found an excellent medication for this, but now I only take it when it is extreme because the medication made my brain fuzzier.

Screen Shot 2014-05-26 at 4.32.54 pmI live with fatigue. It stands to reason that my body is tired.

 

Medications and Treatment (pre-Immune Suppression)

The general approach with Dysautonomias, is to treat the symptoms. So for everything you see above, there is something I take or do to try and help it.

 

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  1. I take Mestinon, Domperidone and Cyclizine 4x day.
  2. I take Solificenate Succinate, Gabapentin and (a list too long to be bothered recording) of laxatives on an as-needs basis.
  3. I use intermittent self-catheterisation and enemas as necessary.
  4. I also have, and highly rate, osteopathy (thank you Glyn, you are a genius!)
  5. I have iron infusions when my iron gets too low from malabsorption (these are also genius).
  6. I am currently seeing some immunologists who think it is probable that I have sero-negative Auto-immune Autonomic Ganglionopathy.  Pulse IV steroids point to an auto-immune aetiology, so moving forward I may trial other immune modulation therapies.

I rely on my husband, my kids and my friends for help, encouragement and support.  I don’t like to ask, I don’t like to receive, but I am learning how.

Still with me?  You are amazing!  Thanks for sticking around!