Dysautonomia awareness month

Oh how ironically this month began for me! Here we are in the awareness month for autonomic dysfunction and there I was, on the last day of September, listening to a doctor tell me that I had not been clearly diagnosed with any sort of autonomic dysfunction, even though the whole reason I was there was to discuss my third type of meds specifically intended to help stabilise my Autonomic Nervous System (ANS)! <headdesk> !
(She wasn’t my usual doc, I’m off to see my doc instead in another week or so).

Yep, you didn’t just imagine that paragraph, I really did go for an appointment about my latest ANS-stabiliser med only to be told that I don’t have any official autonomic dysfunction!

I have CRPS… that in itself is a form of autonomic dysfunction (Dysautonomia). (See my description of CRPS including the ANS pain amplification here).

Current research shows the extent of autonomic involvement in CRPS. (See Schwartzman’s research paper link on this page), and indeed a lot of autonomic issues have popped up to keep me company on my journey through life during the last few years.

I wrote a post about how SSRIs can help to stabilise the ANS, about how jaw clamping can be a side effect owing to resulting dopamine suppression and how it might be worth me trying a mixed SNRI as they function as both an ANS stabiliser and reduce dopamine suppression… Well, the doc I saw said that she only prescribed it because I asked for it!

It is true that I want a doctor to listen to what I have to say, but one that prescribes whatever just because I ask for it? How responsible is that? I’m not medically trained. I’m an expert patient – I know a lot about my own condition, and I’m trained in research so I know how to trawl the journals, how to read things with a pinch of salt and how to slowly build up a potential picture, but I expect to be able to take information and knowledge with me to then discuss them with someone who is medically trained and can offer further insight on the information I’ve gathered. Not blindly prescribe me meds without any discussion at all and without any knowledge of my health issues.

References to my having ANS dysfunction should be throughout all my notes of the last few years and the advice of the consultant ties in exactly. However, lack of awareness of autonomic dysfunction is the issue here…

We have here an example of a doctor who plays it by the book, which is not to be sneezed at on it’s own, but this doctor will not see a pattern in a patient’s notes and does not want patient involvement in higher thought processes. She wants to see a clear diagnosis and if the consultant does not state the obvious she sees it as non-existent until the consultant does so.

She has advised me that she does not want to hear me use medical anacronyms, and she does not want to hear about dopamine. She stated clearly that..

“We are here to treat patients and symptoms. That is all. I only want to hear about side effects, I do not want to hear you talk about dopamine.”

Oh silly me, there I was interested in a treatable cause rather than an endless treating of symptoms and side effects instead. *sigh*

There are some times when you stand up for yourself, and I did. With tears in my eyes that did not fall I pointed out very calmly that it is difficult not to mention dopamine when it may be the whole reason that I have jaw clamping issues – we cannot treat the cause if the potential cause is not to be mentioned or discussed. I also explained that I am not stupid, I know how to read research in a sensible unbiased manner and have not just grasped one paper and run with a concept.

I got a tight-lipped ‘look’. She stood up to indicate that it was time for me to leave. I had been told. I knew I would get nowhere with this doctor, even talking sense was not allowed because it was not in her rule book for patient behaviour. So I left…

…and promptly burst into tears in the corridor outside. Ah yes, there are times when you stand up for yourself, and times when you keel over. Both in one day, eh? Classy!

Do not research for causes or use medical terms

After sobbing my heart out quietly in a sideroom which a passing nurse had kindly offered me, I eventually got to a stage where I thought I could walk home without nearly passing out. (No ANS issues, haaaa!) And by the time I left I had formulated a plan.

The Plan:

1) Never to see that doctor again
2) To catch up with my paperwork and get my notes from the autonomic consultant because his letters left so much of our conversation out (and therefore won’t be in my general notes)
3) To ask my doctor to fax the consultant dept’ asking The Question i.e. please can you put in writing to what degree this patient had autonomic dysfunction at the time of her appointment?

The reason for #3 is that I have been through several years of autonomic-related appointments… respiratory (for breathing techniques and acupuncture), cardiology (for ECGs and more), culminating in the neuro-vascular autonomic specialist tests last year and the related consultant appointment this year, since followed by a hypermobility specialist and soon to be followed by a jaw-clamping (TMJ) specialist. If I risk seeing a doctor who doesn’t believe all of that despite the list of my medical adventures, then I need a bulletproof statement of illness from a specialist to bypass such silliness and allow me to have a sensible and relevant conversation instead of going back to square one again.

Don’t forget:

– Always get copies of your hospital notes
– If your doc’ doesn’t respect you and/or won’t work with you – change doctors

The autonomic consultant didn’t state the obvious because, to him, it is obvious. He and I both know it is already in my notes and besides – I’d been sent to him for specific testing to figure out what exactly was going on with my ANS, not to find out if it was wonky or not, we already knew it was wonky.

If the doctor I saw had been aware of autonomic dysfunction then all the info’ is there in my notes for her to see. That is how important raising awareness about this condition is. Because without that awareness patients can be left hanging without appropriate support, discussion and treatment for their condition. And, like me that day, they can feel so very exhausted from having to fight for every little basic step when they really shouldn’t have to.

Knowledge. Awareness. It really does make a massive difference to effective appropriate care.

To each of us patients, to our treatment, our quality of life, our ability to concentrate on our life instead of endlessly trying to explain to a doctor who draws lines in places where there would be no need if they were aware of some important basics.

And to each doctor it would save them time, and help them to do their job more efficiently and effectively. Not to mention reduce the number of angry/weepy/distressed patients they have to deal with. Plus it would enable treatment of some of the causal issues instead of the endless roundabout of treating symptoms and side effects without looking at the ‘why’.

There is no need for the kind of damaging appointment that I experienced.

Awareness needs to be raised to avoid this kind of damaging event which can detrimentally affect patient health. Bear in mind that living with autonomic dysfunction such as POTS has been likened to the quality of life experienced by patients living with chronic heart failure. Yes, the kind of damage that can be done through lack of awareness is frighteningly massive.

I am able to go to another doctor, I have years of self-advocacy experience behind me and more research papers than you could wallpaper your house with. But what about our fellow patients who are new to this? Just learning? Still trusting what all General Practitioners say instead of having enough hard-earned know-how to spot which doctor ‘gets it’ and which doctor could be damaging to work with?

This month is Dysautonomia awareness month for good reason. It’s not for heart-warming feel-good vibes. And it’s not some sort of my-illness-is-worse-than-other-illnesses thing! It is simply a response to a dire need for greater Dysautonomia awareness.

Awareness in patients
Awareness in doctors
Awareness in family and friends

Awareness solves a lot of potential issues before they even begin.

So if you get the opportunity, please share some info’, here’s a few ideas for links you could share as well as links to some other ideas about how to get involved…

Dysautonomia awareness ribbons from DINET on Facebook which you can use and/or share

Dysautonomia SOS basic info’ link to share

Dysautonomia International are having a tweet-a-thon

Dysautonomia International map of events to see if there’s one near you, (you can choose what is shown in the drop-down box at the top, at the time of writing there are only events listed in the USA)

Other ideas and links listed here from Dysautonomia International

Other ways to get involved via Dysautonomia SOS

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome: A very informative video by DINET about living with POTS. As many forms of autonomic dysfunction involve the same symptoms this is a great video to watch whichever form you have as there is lots of information and advice included.

What is Dysautonomia?

Dark blue for Dysautonomia (Autonomic Dysfunction)

Dark blue for Dysautonomia (Autonomic Dysfunction)

Thank-you, xx

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10 thoughts on “Dysautonomia awareness month

  1. I know that the staff in the NHS are over-worked and have too many targets and budgets etc.
    – All of that must have an effect on them as people, but bloody hell!
    What a patronizing idiot!!!
    I still reckon we should do you a sign with the key points on it, along with “Expert patient” and “Masters degree in Research.”
    It’ll be a nice wooden sign.
    You can start each appointment by showing it to the relevant medic, and if they come out with anything bloody stupid you can whack them over the head with it!!!

  2. I’m sorry this happened to you! You’re a strong woman for holding it together and standing up for yourself prior to letting yourself breakdown.

    It seems to me like doctors who don’t know how neurotransmitters work and how various combinations of levels of them can effect the body, get very hostile and uncomfortable when patients bring them up. They’re willing to prescribe drugs to change the neurotransmitters, but not actually talk about what the neurotransmitters do or think about the mechanisms of action of the drugs. It makes no sense!

    • Thanks Jackie, yes it’s a shame that some of the doctors who aren’t aware of the finer details decide that pretending those details are not relevant is the best course of action! And as for choosing to treat symptoms instead of looking for the cause… well that’s just plain silly! There are some doctors we just have to deal with as best we can and then steer well clear of, eh?! x

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  4. Hi Elle, that was a fantastic read about Dysautonomia. I recently had another appointment with my pain clinic consultant where I had asked her if she could arrange for me to have a HUTT test as i’m fairly sure I also have Dysautonomia along with my CRPS. She looked at me while writing “hut” lol and said what’s a hutt test? FFS really?! For the love of all that is holy! For years I have been having heart palpitations & pains, excessive sweating for no reason, dizziness etc etc & this is all on record. After explaining to the pain consultant what a “Hutt test” was, she just looked at me & said well, it won’t change the way we treat you anyway! Do all patients feel like their smashing their head against a brick wall at times?
    Keep up the great blogs Elle ❤ x

    • Oh yes, that darned brick wall, eh?!
      If you can get referred to a specialist to do the test instead of a local department (although many of us have a local one first) it will be more reliable and they can run more specific tests to get more info’. An autonomic specialist would be awesome. With your experience you probably already know this, but it’s always good to mention in case someone else reads this who didn’t know before. I got referred to an autonomic spec’ after finding an appropriate one on DINET’s physician list. Seems pretty hilarious that a doc’ could then turn round and say I’ve not officially got any ANS issues, so I am now working on getting the magic word into my medical file again! Oh the wonderful work of patients is never-ending, huh? *sigh*
      Glad you liked the post hon, hope you’re having a low-symptoms day, xx

  5. Been there sunshine! “we have no description of the type of injuries your HMS can cause.” When I started explaining, she said she needed it from a doctor. Not very useful eh? Could you perhaps write to the manager and explain the fact that this doctor made you feel crap, left all your issues unaddressed and wasn’t sympathetic? Then at least that doctor will be watched for future similar incidents.
    I hope your regular doctor is more available soon. 🙂

    • Isn’t it just glorious?!
      I will think on your suggestion. It’s a good one, but I know that the head doc’ is similarly biased so it may be without repercussions or it may result in me being flagged instead of the doc. I don’t trust the head doc to comprehend my concerns! Hmmm /pondering/
      Hope you’re doing okay after the move and settling in nicely, I must pop over and visit your blog to catch up 🙂 (I’ve been a bit awol after being guest at a wedding, you know how the aftermath goes!) xx

      • That is a valid concern. I moved from my old GP because they had flagged me as a “troublesome patient” (code for hypochondriac) and all because I got annoyed at a nurse who couldn’t understand why my partner couldn’t travel half an hour by bus with a severe hernia and gastroenteritis!
        Non helpful medical professionals never cease to amaze me.
        I’m doing ok. Down to one crutch now, and back at physio. The move went well, other than a few bathroom repairs that will need doing. I can’t get over the sheer space! It’s massive!
        I’ve got an interview for the PhD on the 25th, so will probably just be blogging incoherent excited sentiments until then.
        I’ve been a bit awol too, only without a real excuse! Guess we will both be playing catch up again. 🙂

        • I have been keeping my fingers crossed for your PhD. I have one friend who has been accepted and started and two of you currently applying that I am screwing my eyes up and wishing for! Good luck for the 25th (waaaaay in advance, but I never know when I’ll keel over and/or fog up! 😉 )
          Looove that you have so much space. I want spaaace (coz I want a dawg) but this place needs tidying up first (i.e. lots of painting on the To-Do list)! And you’re down to one crutch too, eh? Wow, good going! Well done Super Hobbit, I’m cheering you on as always 😀 x

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