Temporary cyborg and wearer of an invisible (purple) cape

I must be turning into my very own special version of old-young-person…. coz there I was a few weeks ago, sitting in my third cardiology appointment complete with thin hospital fleece, and whilst I was aware of my body temperature yo-yo-ing between shivering cold and a half-hearted attempt at self-combustion, my brain was otherwise occupied and volunteered a suggestion….. ‘oooh, this fleece would be really handy for covering the winter veg’’!

<facepalm>

Gardening thoughts? In a cardio’ appointment? Ah well, I do use distraction as a handy tool for coping with my conditions and their symptoms. I guess it must’ve become a seriously ingrained habit!

So yes, … I finally got to see a cardiologist, and my near-fainting issues all made the same sense to him as they did to me. Huzzah!

He even knew what CRPS was, and how it can sometimes result in general autonomic dysfunction. It’s such a relief to not have to explain my medical condition for once. That’s the trouble with having a comparatively rare condition, you usually end up training the doc’s, and they’re not always too happy about the knowledge switcheroo!

Yes, the near-fainting persists. As does the generally increased, but crazily variable heart-rate. This coupled with my existing autonomic dysfunction and my long list of resulting varied symptoms, suggests that it’s ‘just’ my ANS being spectacularly inappropriate! As usual!

I say ‘just’. Obviously it’s actually quite bad as there’s not much in the way of treatment. But, as I see it, it’s nice to hear normal things about my body these days! Normal size and shape of heart, for example. Always nice to find something that’s being what it should be. Even if its behaviour is wrong, courtesy of the weird instructions being sent because I have a neurological skew towards biological mayhem!

So I started to write this whilst wearing another ECG. My fourth home-ECG in the last few months. There were wires sprouting out all over the place. I probably looked like some kind of cyborg. And I probably should have practiced some robotic beepy noises for the occasion.  😉

(To be read in your best Dalek voice….) “Exteeerminaaaate!”?

The cardiologist’s plan was that the three-day ECG would (hopefully) show a degree of heart-rate variability which would back-up the theory that these symptoms are also because of my autonomic dysfunction. It would be easier to prove if we could record an arrhythmic heart moment, but they are random and I seem to be in a quiet phase on that front at the moment.

During those three days, though, my heart was being quite calm. Continuous light-headedness as usual, of course, but not any heart-rate variability that was obvious to me. Perhaps sitting at the laptop or having a calming Tai Chi lesson would not be that helpful in trying to demonstrate symptoms of heart-rate variability! I made sure I listened to Jared Leto’s dulcet tones on the drive home from Tai Chi, though, so surely listening to that voice would have raised the heart-rate a wee bit?! 😉

Oh?… Jared looks a bit surprised to be in a blog about dysautonomia!
(Image: free-extras.com)

It’s such a good feeling when I get to see a doctor who already knows about my condition. It’s a whole conversation that I just don’t have to have. When I visit my general physician, he doesn’t say much. He just sits and looks at me. He listens to what I say, but he doesn’t usually enlighten me about what he’s thinking at all.

It’s tricky not having a two-way conversation with your medical first point of contact. You never know where you are or what is really going on. My doc’ doesn’t know much about CRPS or dysautonomia simply because he’s not specialist trained.

Poor confused Doc’!

Neither am I of course, not officially. But after more than 12 years with CRPS I wasn’t surprised to be told by the specialist pain-management doc’ a few months ago that she was adding “expert patient” to my notes. It doesn’t seem to have made any difference, but it was a nice compliment! 🙂

As I write this now, I am no longer part-cyborg. And the ECG results came through as not showing enough heart-rate variability to officially pin the symptoms on the dys’. Not enough Jared Leto, I should think.

When I went to see the cardio’ again, (because I’m now getting near-faint symptoms after just ten minutes of activity and in fact all the symptoms are worsening at a very scary rate), I was sooo nervous! Not about the appointment, but about the likely unhelpful outcome.

I’ve been advised that there are no specialists in autonomic dysfunction, and that I’ll have to go and see other specialists about each symptom, starting with the most problematic. So… gastro-doc’ next then, as the continuous near-fainting and permanent nausea are the ones I’m fighting hardest to get something done about. The neurologist will have to be a close third because the varying loss of vocabulary and basic lack of comprehension generally is causing major problems at times. (Yes, I know I probably sound fine on here but I write this when I happen to be more able, and I re-read for errors about a zillion times before posting)!

By the way, he also advised that the array of other specialists that I should see, will also not know how to treat me! I ask you….what is the point? Send me to a specialist who does know, then. Surely that would be the next logical step? Bit of a waste of everyone’s time otherwise.

Strangely, he later added that there are no autonomic dysfunction specialists in this part of the country. So they do exist then? I am confused! If I lived somewhere else would I get treated?

I found out some more info’ about my ECG results. It turns out that there actually was heart-rate variability demonstrated. A normal heart-rate for an adult is 60-100 beats per minute, some online info’ refers to an average of about 72 beats per minute which probably varies with age. My average was consistently 70 across all three days, cool, eh? Um, not exactly! It may be a good average, but my heart-rates throughout each day were actually ranging wildly. It was pretty much the same each day, so as an example: on one day I ranged all over the shop from 34 to 154bpm! That’s not normal! Especially during quiet, chill-out days.

And this is where my glee at finding a specialist that knows about my condition ended. It turns out that there are people that know of, and people that actually know how! He knows of CRPS and some dys’ conditions like POTS. But He doesn’t have any experience in treating them. He does not know exactly why I am near-fainting all the time. I get the low heart-rate (vaso-vagal) near-fainting, but also the high heart-rate near-fainting that suggests something like the blood vessels not constricting in my legs, but he doesn’t really know. And he doesn’t appear to know how to find out, either. Which leaves me in a bit of a pickle, because you can’t treat something when you don’t know what it is you’re treating.

He’s asked for a fainting test, though. Although he says he doesn’t know if ‘they’ will consent to run the test on me as I haven’t actually passed out yet!

You don’t have to actually pass out to be diagnosed with POTS. I am puzzled as to why he thinks fainting is important in dysautonomia, but that near-fainting is not.

We already know that I have dysautonomia, albeit only through verbal discussion. I have no official diagnosis letter to wave at doctors. And a key diagnostic tool for dysautonomic stuff is this fainting test he’s referred me for. It’s known as the ‘tilt table test’. It basically entails monitoring the heart-rate while you’re at rest lying on a table, to which you are gently affixed(!), then the table is raised so that you’re nearly upright and the heart-rate continues to be monitored at intervals for a fairly long period, (I’ve been told that the appointments last about an hour).

The Tilt Table Test

Fair enough. A positive outcome from a tilt test would go on my notes and give future doc’s a medical starting point instead of going through the usual time-wasting rigmarole of doubt and confusion! So it could be helpful. Although bearing in mind that even 70% of POTS patients come up with a negative tilt table test, a negative outcome could actually be more detrimental when in the hands of the untrained and uninformed.

What I was not expecting was to be told that the reason for requesting a tilt test was to see whether I should have a pacemaker fitted……..*gulp*. Pacemaker???? At my age?? Egads!

This is his reasoning….he says he only knows of two treatments:

1)      Heart medications. Which affect the heart-rate, but as my heart rate varies so much… it can’t be medicated for. As soon as a med kicks in to solve one heart-rate problem, my heart will hippity-hop to a different pattern of behaviour, thus requiring different meds before the other ones have even worn off. So meds like beta-blockers and such like are not viable for me.

2)      Pacemaker! He says my ONLY option is therefore a pacemaker. It would be set to kick in if my heart-rate drops too low. But it would not solve any of the other problems and so would not be of much use overall. As a CRPS patient I need to avoid all invasive procedures unless absolutely necessary. And this would mean multiple surgeries as each pacemaker wears out over the years.

So that’s the choice that I’ve been given. No meds. Just…pacemaker…or continuous and worsening near-fainting.

He expected to wave me off to live my life despite continuously nearly fainting all day every day. Why did he not suspect that this may not be very appealing to me? Mysterious minds of specialists. ‘Can’t fix it, so it won’t get fixed, that’s just the way it is….byeeeee, have a nice life’. Really?? Yikes! I know of some meds that could usually be discussed at that point, but he doesn’t usually treat people like me so he just doesn’t know. In his view it’s simply pacemaker or nothing.

So is that it, then? There is no help?

I know that there isn’t much that can be done, but after doing lots of research and watching the Dysautonomia Information Network’s fabulously informative video about POTS, (a primary form of dysautonomia which has overlaps with my own dys’ symptoms), I was under the apparent misapprehension that some meds could at least be trialled with each patient to have a go at helping to reduce symptoms. Things like increasing sodium uptake to improve blood vessel constriction in the legs, or increasing serotonin in the brain to even out heart-rate, and so on. But the cardiologist is only specialist in his own area. So unless I can find someone out there by my own random and untrained searching of the health service, then I will only get to see specialist doctors who are not trained in the dys’ stuff.

Suffice to say that it was not a jolly experience that day. I was basically told that my worsening symptoms, that are preventing me from being on the planet and from doing-stuff/making-sense-of-stuff moooore and moooore of the time, are actually…. the New Me. 😦

My view of the world is rather like this a vast percentage of the time. My eyes don’t necessarily see it like this, it gets experienced like this.

So yes, I felt a few tears trickle down my face. Sometimes even the strongest and most determined cannot avoid a chink appearing in their armour once in a while! I kept talking, though. It’s not often I get the chance to see someone who has any clue at all about my condition, so I wasn’t going away without asking my questions first and being gracious and appreciative for his time. Despite the emotions wibbling on the inside!

Then I left the building circuitously, (via the disabled loo), and blew my nose as if I had a severe addiction to tissue and there was an international snot shortage that I was hastening to amend. There, sorted. No more snot shortage in the modern world! Job done.

Right. Deep breath. I had to drive home safely and get on with my day, and my life. Stuff to do, life to be lived. Check the bathroom mirror – how bad do I look after the torrents have passed?

Well, it had resulted in a comedy pink face, but my eyes looked all twinkly so maybe it’s a new look to consider?!

So with my imaginary (purple) cape swirling around me, I unlocked the door and stepped back out into the world to continue to be a version of me.

Okay, so the cardiologist wasn’t so helpful after all. So before I ask about a gastro-doc, and a neuro-dude, I’d better rethink the vascular issues. Hmmm…time to start searching for an Electrophysiologist, apparently!

Gnomes Bane. Daaahn-da-da-daaaaahn! My Clark Kent version of me was having a wobbly day. But that was that, no more crying. The answer was a nice cuppa. Isn’t it always? And maybe some commiseration chocolate. Oh, and this post, of course.

x

Newer post on autonomic tests (including TTT) here.

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14 thoughts on “Temporary cyborg and wearer of an invisible (purple) cape

  1. There are external pacemakers – but they seem to be viewed as a temporary fix before the implant-type.
    Hmmm…
    Also it seems that wearers of external ones get physical jerks as a side effect – must be like those “I-can’t-be-bothered-to-exercise-my-abs” machines.
    Hmmf!
    Well, it was a thought…

    • And even if it was a viable option, I’d still have the near-fainty stuff from the high heart-rate end of the scale. I am working on my notes for the doc’, and trying to quantify symptoms for him. Once they’re all tied up (it’s taking a while to get copies of hospital notes) I’ll be visiting my doc’ with (hopefully) coherent explanations and requests. Stuff to do, as ever! x

  2. Finally had a look at your site. I think its fab, haven’t read much yet as have to go out. Looks very professional. Well done dear friend.

  3. I fell behind amist my own meltdown, so I’m catching up bit by bit here …

    Here is another trick to help renormalize the CBS and help calm your brain. Since you have a sweetie, it’s doable for you.

    Lie face down, propping forehead on pillow if you want your nose pointing down. Sweetie faces you and puts one hand across your hips (upper butt) and one across your shoulder blade area. Then sweetie rocks you gently back and forth.

    We aren’t talking rolling from side to side. It’s a gentle shifting of your center from one side of plumb to the other. You’ll feel when it’s right. It’s wonderfully relaxing. Try a couple of minutes a couple times a day, see what happens.

    A trick from my brilliant massage therapist.

    • Thanks for the tips, I have explained the gentle-rocking one to the famed ‘Magic Dude’, so hopefully we can try this and see what happens. I’m almost ready to wave papers at my doc’, so I shall bear the spine-injury doc’s in mind, x

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  5. Hello Elle!
    Big soft hug. I’m Hope and I too have RSD/CRPS. Full body /internal as well 12 years. Everything your write so eloquently of is so incredibly familiar to me. I have the blood pressure issues, the heart rate issues, the digestive issues, more recently, visual issues. For the past 3 years I have been seeing Dr Schwartzman in Philadelphia. He was the only doctor that I had seen in 10 years that confirmed what I ( like you) suspected all went together. I had also seen countless other individual specialists. Always left with the same “We just don’t know”… So maddening!
    But Dr S did know. Put it all ( sadly) under the giant RSD/CRPS monster window. I currently treat with IV Ketamine infusions which tend to keep some of my issues at bay ( not all, by any means). But some. The internal stuff really never goes away. K helps with the pain so that the rest becomes more manageable. (basically).

    I just wanted you to know how amazing I find you and your writings. You are quite the inspiration. Please, I know it’s difficult, but don’t stop writing! You are so much to sooo many. I think you have found your purpose.
    Can’t wait to keep reading.

    Hope
    allsortsofhope.com

    • Hiya Hope, soooo lovely to meet you! A fellow CRPS veteran, eh? No wonder your blog is so gorgeous (I just took a peek, lovely writing and a gorgeous positive underlying vibe. You’ve been pocketed in my ‘favourites’ folder for happy reading during sofa-bound hours 🙂 )

      Fantastic that you’re getting treated by such a good name in the field, Dr Schwartzman is a name known in CRPS circles around the world. One of my friends is being treated by the chap who trained him years ago. The world shrinks every year that I’m online, it’s wonderful being easily in contact with others around the globe. It’s so lovely you saying that I am an inspiration, I can’t begin to tell you how much that means to me, but I want to tell you the same thing. Your attitude that comes across in your blog is really lovely. (And Hopefucious is very wise indeed)!

      Thank-you for the encouragement, I have been recovering from recent hospital tests and medlessness, followed by the resulting side effects of going back on the meds again, of course! But I will be back blogging as soon as my brain returns from it’s chosen cluster of wafty clouds that it’s probably hiding in 😉

      Sending love and a virtual non-hurtee hug your way, xox

  6. can you tell me where you get the stats that 70% of TTT’s come back negative for POTS patients? Mine was neg but I have Hyper-POTS.

    • Darn it, why didn’t I keep a note of that?! I really should have because now I can’t find it, I’ve just gone through all the tilt table papers and links I have saved but haven’t found it yet! So sorry Joya, I’ll keep my eyes peeled and when I find the reference I’ll add it on here. I have found a couple of other links in my searches though…

      http://www.permanente.net/homepage/kaiser/pages/f63759.html
      The last paragraph of this link is headed ‘Problems with the test’ and says.. “Because the tilt table test has a high incidence of false positive and false negative results, it is not an ideal test to diagnose vasovagal / vasodepressor syncope and should be used judiciously. The tilt table study is not a “gold standard” for the diagnosis of vasovagal / vasodepressor syncope. The “gold standard” is still the physician’s careful and complete medical history. In fact, if the clinical history is strongly indicative of vasovagal syncope, performing the test to confirm the diagnosis may – if a tilt table test turns out to be negative – confuse the clinical evaluation and steer the physician away from the correct diagnosis.”

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC101078/
      And this research (2000) discusses the level of reliability and reproducability (I may have just made that word up, but you know what I mean!) regarding ‘normal’ volunteers and people with a history of Neurally Mediated Syncope (NMS)

      x

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