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.
Symptoms From Top to Toe:
‘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.
I 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)!
Dizziness 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.
The 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.
Heart 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.
My 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.
I am nauseous on and off all day and especially at night. This is a side-effect of the medications which produce peristalsis (intestinal squeezing).
My 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.
My 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.
I 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.
My 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.
I 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.
I 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.
- I take Mestinon, Domperidone and Cyclizine 4x day.
- I take Solificenate Succinate, Gabapentin and (a list too long to be bothered recording) of laxatives on an as-needs basis.
- I use intermittent self-catheterisation and enemas as necessary.
- I also have, and highly rate, osteopathy (thank you Glyn, you are a genius!)
- I have iron infusions when my iron gets too low from malabsorption (these are also genius).
- 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!