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

 

Screen Shot 2014-05-26 at 3.53.39 pm

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.

 

Screen Shot 2014-05-26 at 3.40.06 pm

  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!

20 thoughts on “A Medical Menagerie”

  1. Rach – I really didn’t know. How amazing you have been to hide all this from us but how incredibly wonderful and even more amazing of you to now share all this with us. Thank you. Love you. Jan xxx

    1. I think there are lots of people who hide their struggles. I know I am not the only one who does! It’s possible to get through tough stuff without blogging about it(!) but I am finding it is actually helpful for people to know without me having to explain it. Some things are TMI for some people, and other things are hard to talk about. I so appreciate your comments Jan, you are such a kind and warm person. Thanks for reading such a looooong post and still taking the time to comment!

  2. Rach, I love reading your blog, you are a very talented writer. It’s a brave and wonderful thing to write such truthful and intimate details of your life experiences, but I am you are helping many people (including me) understand your condition, and that is a fantastic accomplishment! Well done, take care and keep up your great work x

  3. Barb (from CrochetRising)I am so in awe you. I don’t know what compelled me to read this particular post at this time but it was meant to be. I’ve been in so much pain during our class (I have peripheral neuropathy & a lot of damage to my spine as well) that I was feeling a bit isolated & alone. I hate for people to know I have so many problems and I really really hate asking for help. I’m the one who should be giving the help-not being on the receiving end! I don’t think I have the words to thank you now because tears are streaming down my face and snot is coming out of my nose. You know-the ugly cry thing. But the crying is letting the pain out and I have you to thank-xx

    1. Oh Barbara I am so sorry to hear about your pain. Glad you feel less alone in it after reading. There are many of us, hiding undercover. Peripheral neuropathy bites. Have you found anything useful to help? It must cause you endless frustration with your crafting. Hugs to you. Sometimes you just need a good cry.
      Arohanui,
      Rach

  4. Beautiful writing. I loved reading your story, and your attitude to life is inspiring although I struggle to find the right words! You are amazing, truly.

    1. Oh Jenny, thank you. These days, finding the right words seems like the best thing I can do to help myself and other people like me. You found some lovely words for me today! Thank you so much!

  5. I would have cried when I read this, if I could. This page has literally described everything I’ve been dealing with (except I am only pre-syncope and have luckily only fainted once in my life). I am so sorry for what you’ve had to endure. I’ve been struggling for a very, very long time to get a diagnosis, or even to get doctors to take me seriously. I have begged and pleaded, “Please help me, I feel like my body is shutting down, one area at a time.” They brush me off, refer me to another doctor who refers me to someone else. I’m trying to find someone who can help me, and I’m trying not to give up. It sounds like I may be in this for the long haul. Please feel free to contact me if you’d like to talk with someone who knows how much it sucks (right down to the enemas, sigh).

    1. Hi Jen. I am sorry you know firsthand how much it sucks. I’m always sad to find out there are more people who are suffering without a clear way forward. Are you in New Zealand too, or somewhere else in the world? Don’t give up. Never give up. There are lots of possible causes, plausible answers and even some treatable forms of Dysautonomia. Hang in there girl. X

      1. Thanks, Rachel! I live in the U.S., where I used to think we had access to world class healthcare! I am likely going to be traveling soon to try to get a diagnosis and treatment plan. I’m sorry for what you’re going through as well, but I just want you to know that you inspire me — being brave in the face of all of this is very hard, and it’s nice to see that someone going through it can still have a family and friends. Maybe someday I can still have a family of my own, too. 🙂 Best of luck to you, lady.

        1. And to you Jen! Stay in touch and let me know how you are getting on. Will you be going to Vanderbilt or The Mayo? Or somewhere else? Never say never when it comes to having a family of your own. Life can sometimes surprise us 😉

          1. Thank you! I will keep in touch; it’s nice to know someone who truly understands, even across a great distance.

            I’m heading to a Dr. House style team at the Cleveland Clinic, but the waitlist is 6-8 weeks.

            And I’m hoping! At this point I’ll settle for a partner who can stick around through all of this. 🙂

          2. Finding a good one is the biggest challenge in life. Then when you have a good one, living up to what they deserve is even harder! Good luck at the Cleveland Jen. I can’t wait to hear how you get on!

  6. Thank you so much for sharing your personal story. I think you are incredible. And I just love your blog name. Great play on words. Gosh, I’m still shaking my head at all you endure. So pleased to have connected with you. Xx

Leave a Reply

Your email address will not be published. Required fields are marked *