Tuesday 11 November 2014

Non-compliant, Empowered Patient, or just plain tired.

I'm sitting on my bed looking at an unfilled medication script lying on the sheets in front of me. I've had it for a few weeks now, but am yet to take it to the pharmacy. I've tried it before with little success, but personality-bereft specialist number 28 has told me to try it again. It was written up before I had even been given a chance to agree or disagree. He had decided I should try it and that was it.

When I said it was like taking Tic Tacs last time, his response was:

It probably wasn't a high enough dose.

When I asked if he really thought it would work in my case:

It helps some people.

Are there side-effects?

It can drop your blood pressure.

When I was still not keen.

Keep going up in dose until you either have too many side-effects or it works.

When I told him I never have sedative effects from medications (a long-standing, well-documented issue), including this one:

It'll help you sleep.

And so I left, unheard, ignored, with yet another script in my hand.

And I sit here today with the same script sitting unfilled before me. Knowing that I have to see him again next month to update him on my progress. Knowing that the more I look at the script the more unlikely I am to fill it. When you know a doctor hasn't listened, it is very hard to trust their treatment decision.

So much of treating this disorder is trial and error. It is the case of Medication A helps some people. We don't know why. Or how to predict who it'll work for. Or who it will give horrendous side-effects. But you must try it. And so you do. You think doctor knows best. They treat this so they must be making a reasoned decision on what they prescribe. And then you find that you can't control your leg muscles, or that you are in so much pain from excessive vasoconstriction that you feel like you're having a stroke or heart attack, or that you have uncontrolled vomiting and diarrhoea, or that your blood pressure bottoms out, or that your mood is altered, or..... Without knowing a cause, symptom management can lead to many unpredictable and unpleasant reactions.

I've spoken before about the fact that it is patients who bare the greatest burden of any treatment decision. All treatment decisions come with a risk/benefit analysis. All treatment options have risks attached to them. One look at the information sheet that comes with any medication and you are given a list of the generic side-effects, gastrointestinal disturbance, nausea etc, then there are a list of less common and more serious side-effects. As a patient you have to weigh that up against a potential gain, usually symptom control, that may be achieved. For example, I have nausea and vomiting regularly. The only anti-nausea medication that now works for me, contributes to constipation, which I already experience. Which means I have to now take another medication to counteract the increased constipation. But if I didn't take the anti-nausea I'd never eat and could hardly function. And so the cycle goes.

As a patient you have to weigh up potential gain against potential risk.
And that equation will be different for each patient.

For each of us that will be different. My acceptable risk will be different to another patient's acceptable risk. Another example, for me the benefits of taking Florinef outweigh the gastrointestinal distress, or the long term potential side-effects such as osteoporosis or glaucoma. Others are not willing to take that risk. We, as individual patients, must make the decision that best serves our individual presentation, our beliefs, our desire to use or not use traditional medical treatments, what we can afford, what we can access, what level of potential gain offsets potential risk, what other conditions we have, and what emotional investment we are willing to put into the hope-try-disappointment/success cycle.

After 8 years I am tired of maybe. Maybe this treatment will work. Maybe it'll not give you horrendous side-effects. Maybe it will be easy to come off. Maybe it wont contribute to the difficulties inherent to polypharmacy.

It is me who has to pay the greatest burden for any treatment. 

I am happy to try a medication that has a higher level of success based on my individual presentation. A reasoned decision. Not a maybe decision. I am not early in my diagnostic journey. I have done the hard yards. I have tried many different treatments. Even ones I was not keen to try. The last of which dropped my blood pressure and altered my mood to such an extent that it was apparent to all around me. I am not keen to go down the maybe track again.

My experience as a long-term patient is valid. I know my body. I know how it reacts. I come from a background in health and research. I know how to weigh up the data. I also appreciate and value the expertise of my doctors, it's why I go to them in the first place. But more importantly,

I am the expert in me. 

I already take 15 tablets each day, not including breakthrough meds for things such as pain and nausea. Adding yet another two or three to the mix (not including the more recent, and completely impractical, recommendation of taking an expensive anti-nausea medication and 2-3 enzyme tablets before each of six small meals a day), is not high on my agenda. Especially not without a fairly high potential return. I am aware that nothing is 100%, medicine doesn't work that way. There are too many variables in the human body. But I am also not happy with the carte blanche attitude towards script writing by some of the medical professionals I have encountered over the years. And a tendency to ignore or underplay the potential downside to a medication.

Each time it doesn't work, or there are side-effects, my already beleaguered body does not bounce back. It does not simply get over it. It takes weeks or sometimes months. Each moment of stability is hard fought and I am not willing to surrender it to a less than convincing maybe.

I am all for a reasoned, research-based decision that is arrived at 
after a collaborative discussion between myself and a specialist. 
Not one which is forced upon me 
with a dash of hope, 
a very large maybe, 
or a paternalistic "because I say so".

It is costly, physically, financially, and emotionally. It is also costly in terms of time. Each trial equals time. Sometimes time lost, sometimes time well spent. But mostly time handed over for a hope and a prayer. If I am to invest 3mths or more in a medication trial, when I live with a progressive illness, I want to know that the odds are in my favour. Each month with no, or negative return, equals another month of illness, of pain, of nausea, of life not lived. Or potentially, a worsening of health. That is a big ask, and one frequently unacknowledged.

I am a motivated patient. I want to maximise my health and in turn decrease my disability.

I am not non-compliant.

I am empowered.

But I am also tired of managing an increasing level of disability and illness, and having to deal with a medical system which seems tailored to a generic norm, and reluctant to listen to the very patients who must live with the decisions made.


Non-Compliant examines decision making processes in depth.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,800, keep donating and hopefully we can reach $10,000.


  1. ugh. I hear you sister.
    I had a ridiculous appointment yesterday. My specialist asked me what was new, I went through my issues in order of importance. He ignored everything I said, including my questions. Then answered my questions about pain and pain relief with a script for tramadol. I am allergic to morphine, but he said "you'll be fine, it's synthetic". He didn't show any interest at all in finding out why I am in pain... like, perhaps it isn't to do with Dysautonomia? I wonder if they ever consider the normal body issues? Or is it that once you have a diagnosis, nothing else from the normal population risk could ever be your problem? "I'm having trouble walking", I said. He said "Yes, I see you have a cane". But nothing further about that. Having trouble walking isn't a usual symptom, but he isn't interested in exploring that. I don't know why I make all the effort to get there if he can't even rouse a smidge of curiosity in my case. It is so disheartening. Depressing. Frightening. I hate the way I have to carry so much of the burden when I'm not the one with a Medical degree. I'm afraid I'll miss something, or not have the right words to explain something. Something crucial.
    I so get where you are coming from with the new (old) med. If you don't have faith in the specialist, there's not much point in putting your body through it. Go with your instincts girl. They're good 'uns. And you are right, you are the expert in YOU!
    Kia kaha Michelle. Wish I could magic it all away and give you an excellent day! What am I saying, if I was magic, I would give you an excellent run for the rest of your days!!!

  2. This makes me so mad. I got really lucky with my (female) general practitioner, but I've had to switch other doctors when I didn't feel as though I were being listened to. I've had a few doozies - I've even had to switch female doctors after discovering that no, they're not all cool. I think it helps to be close to a big city, where there are more choices.

    This seems as good a place as any to bring it up: Has anyone looked into Geitelman's Syndrome? http://www.nature.com/ki/journal/v59/n2/full/4492074a.html It's a rare mineral wasting disorder, similar to Bartter's, and syncope is one of the symptoms. So are a whole host of other symptoms that sound a lot like dysautonomia. Unlike Bartters, the symptoms appear in adulthood. I have an appointment with a nephrologist (kidney doctor) next December for something completely different, but I am going to bring it up and ask that I be screened for various wasting disorders (several of which are NOT "cerebral").

    Speaking of salt-wasting, I'm actually surprised at how much salt (and potassium!) it takes for me to feel "normal." When my cardiologist said "eat more salt" I thought he meant a few extra shakes on my food. But I've found out it actually takes a few teaspoons per day! And it doesn't really make me feel "better" - just helps me hold my water, which is nice but not enough to feel really human. The extra potassium - several capsules several times per day - is helping me to feel more "normal."

  3. Rachel, I hear you. New, or an increase in severity of old, symptoms seemed to be ignored now I have my pots label. Three weeks ago I was sitting in my gps waiting room clinging to the pillar next to me for some stability. I mentioned my increased 'dizziness' and the new ear ringing that wont go away. But apparently I shouldnt be worried about it because my bp reading was 'good' due to a med I was back on. I had stopped it previously due to strong side effects. This time around I was warned not to stop it. End of consultation. I guess I was supposed to celebrste the normal bp readings and the gps brilliant competence. Tough luck that I left with the same dizziness and ear ringing I went there with. The doctir did not wSny to know about it - so I guess I shouldnt be worried right? Except three weeks later - this dizziness has progressed to vertigo. I have made no effort to see my gp again as he did not take it seriously in the first place. This has happened with a number of different symptoms over the years. And when, a few have gotten so much worse and reached a crisis point, I get told "why did you ignore it?" "Why didnt you come here earlier?" Uh.... I tried.....but the message I received was that the problem wasnt worth being remarked upon let alone examined.

  4. I am new to this...I saw a neurologist at Univ of TX SW Medical in Dallas, Tx..Needless to say, getting the run around..even went to Mayo Clinic in MN before that. So my aunt had Multiple Systems Atrophy and died from that. My symptoms include 2 sets: 1) my BP suddenly goes very high or low; with the high I end up having to go to the bathroom a bunch, face flushed, nausea. It happens with no warning, in all settings. #2 I start feeling faint, lightheaded, and have about 15 mins to get home to bed...in the process I slowly start not able to talk clear, not text clear, can't keep eyes open, progressive weakness until finally I go to sleep for 2 hrs. My husband is a chiropractor and checks my blood sugar and BP but not a problem when I have this. I also don't remember things that happened during these events. Ea yr increases since 2010. I call the "crashes" ...like I get unplugged...at times I have "mini crashes" where I feel it starting but it does not go fully into it. Again no common factors. I also get dizzy, out of breath, and now I am being treated with physical therapy for POTS even thought I technically passed those tests, it is to retrain my brain to work with my heart..6 mo process...3-6 mo wait for the next doc...I have all the tests for everything possible...I get new symptoms here and there. I can hardly function but still working.....Neuro said "general autonomic disorder" but can't pinpoint what it is. I had near fatal wreck in 1983 that damaged my pituitary gland so I take shots for that, plus my thyroid - take meds for that. I could go into more detail, but just wanted to put this out there..does this sound like MSA? or other specific Dysautonomia? WHere in the states is the best place for diagnosis and treatment? Help! I'm desperate. I live in Texas.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

Note: only a member of this blog may post a comment.