Autonomic stabilisation (attempt #3)

I’ve written before about my autonomic issues, tests and attempts at autonomic stabilisation, but recently I realised something pretty awesome! I should have seen it months ago but I guess I’m a slow thinker! 😉

Last Summer I was regularly keeling over in the heat. The near-fainty was strong! I carried a flask of fluids everywhere with me, as well as salty snacks and my folded walking stick. There are two sides to my feelings about warm weather:

1) “Yaaaay, at laaaast,  the CRPS pain should lessen a bit!”
2) “Oh no! Back to the regular near-fainting again!”

Unfortunately CRPS & Dysautonomia make a pretty good team for setting me up with health challenges all-year-round.

This year the nagging Dysautonomia hints were tugging at me even in January so I was dreading how bad they’d be by Summer so I went to the doc’s to try to pre-empt it and plan ahead. Surprisingly something actually showed up on another 24 hour ECG (usually heart flutters happen immediately before or immediately after the ECG just to test our patience! 😛 ), and the something turned out to be a 46 second heart ‘pause’. Lawks! So she referred me to a cardio’. Of course the referral failed, got sent again, turned out to be wrong, and all sorts of the usual high jinx. So here I am still waiting for an appointment 7 months after referral, in full-on heatwave (well, British stylee anyway 😉 ) and still no input….


And yes it’s a big “but”…

I have been way better this Summer. Whaa?

I remarked after the Oxford Tai Chi tournament that it was really wonderful to experience what it’s like to get to perform without having to battle so hard against the near-faints (near-syncope). That was only in April but the weather continued to warm up and I continued not so fainty.

When I was worse earlier in the year I wore compression stockings (as recommended by the autonomic consultant) but have noticed a lesser need for them recently.

I also tried the salt tablets (recommended along with the stockings) but could not ascertain a clear difference. So the doc’ took me off them again…. but I didn’t get worse when I came off them, so what’s going on?

Brain fog (2)

I have been muddling along being rather puzzled and confused about this for a couple of months now. Then the other day I was doing some reeeaaally light gardening, stood up… and then went immediately dooooown again. The faintys were back and they were strong. Totally out of the blue, just like that!

And the next day too.

There was no clear direct connection with activity levels, pain levels, stress levels or even heat. I do get worse in hotter environments but apparently it has to be substantially hotter before it affects me these days.

The gardening bit of my brain (this brain area gets bigger as I get older 😉 ) reminded me that it must have been humid recently as we’d been looking up how to treat powdery mildew on my gorgeous moonfire dahlia. And a fellow Dyssie confirmed that yep, humidity knocks her for six too, and then some.

But why the overall change I’d noticed before the humidity hit?

It dawned on me this morning that I didn’t start taking my latest trial of an ANS stabiliser until September last year, and it wasn’t increased to my current dosage until October – so this is my first Summer on this medication. Woah! Mind blown! You mean this thing actually works??!


And woooohoooooooo!

If I could dance around the room without keeling over I would do so, but grinning and giggling to myself on the sofa will suffice. 😀

meds and supplements

Don’t get me wrong – it doesn’t ‘fix’ the problem and yes there are side effects and other aspects to be weighed up. I have no idea what is going on with my symptoms unless I log what’s happening to them over time. I’ve done this with the different potential ANS stabilisers so that I can see the pros and cons of each over time. It looks like I’m gonna have to add a new column with an update!

Here’s what I have listed for my current ANS stabiliser, they don’t necessarily have anything to do with it directly but even so there’s often an indirect link I find out about later (e.g. the effects on the central nervous system, because everything on our bodies interrelates and works together anyway). So I record everything just so there’s a snapshot in time to refer to anyway…

Pluses since starting the latest med’:

  • Near-fainting is set off far less by heat alone and baseline is better
  • Less nausea in general (but still bad at times)
  • The heart dysrhythmia and flappity-floppity (technical term, honest) has been less frequent on all three stabilisers I’ve tried
  • Migraines went back to a more usual regularity
  • The jaw-clamping (bruxism) has eased off a lot
  • Fewer tremors and less extreme too
  • Sharp nerve pains less common
  • Reduced hyper-senstivity to hot and cold (still super sensitive, but any improvement is good, right? 🙂 )
  • Tingling and numbish sensation in face and arms when feeling faint is worse than on other meds tried but is still better overall than pre-meds
  • Fatigue is still bad but less than pre-meds
  • Improved baseline regarding insomnia
  • Pain levels possibly slightly better? Hard to tell because they got so much worse with the previous med’ that I tried!
  • Shoulder pains improved from permanently extreme to varying (but more owing to my changed habits than meds)
  • Less frequent eye-tremors
  • My hair is less strawlike
  • My nails are variable but still better than pre-meds

Remaining crapola:

  • (On this med initially the near-fainting was a lot worse – a stage I had to work through first)
  • (Initially the nausea was worse, too)
  • (Initially more clumsy but I worked on improving my awareness to reduce this over time)
  • (New types of dystonia – initially my left hand would curl in when I wasn’t using it and even my right hand sometimes too).
  • (Initially the dystonia was loads worse in my legs. Plus I would get even more severe restless legs at night, resulting in even less sleep). Still get restless legs issues but not as severely. Likewise with the dystonia in the legs.
  • Brain fog (including problems with words) is worse than on 1st med I tried
  • Bloating worse than on 1st med
  • Constipation worse initially (now is variable and better than that but still crap. S’cuse the pun!)
  • Sweating is waaaay worse. Waking up cold and wet with the bedclothes, and even the bed, soaked through is a common occurrence now
  • Respiration issues got worse (but I think they have settled again. Either that or I’ve just got used to it!)
  • Allodynia on specific areas of skin where the sensation is well and truly kerfuffled (never had this pre-meds)
  • Far more popping, clicking and cracking of joints, and more extreme too. Especially shoulders, and also new weird places to crack like my breastbone. (Noticeable change from when started first ANS stabiliser but can’t see how it would relate)
  • Sharp and extremely severe abdominal pain, not just associated with urinating as it can turn up out of the blue too (less severe and less often in chest, and sometimes head!?). The abdominal, and maybe chest, may be related to my greater hypermobility in my core, but the head pain is a weird mystery!

So yeah, pros and cons!

But being less fainty is crucial to me as I have to be active during my allotted physio’ each day otherwise I cannot manage my pain. So that was the tip-top number 1 issue that I desperately needed addressed. With nothing being straight-forwardly black and white in this game it’s about our own priorities and weighing up the related pros and cons for each of us as individuals with each medication.

And when it comes to brain medicine – we all react differently. So what works well for one may be positively awful for another. A lot of people seem to find that Zoloft/Lustral really helps them whereas it put me into a state of permanent cluster migraine and feeling really ill, so it’s awesomeness in helping my autonomic issues really was of no use with side effects that horrific and disabling. Citalopram is renowned for having side-effects and isn’t even used any more in the USA, and indeed the side effects I experienced were too rough for the ANS benefits to outweigh them. I am currently taking Venlafaxine in an attempt to reduce the jaw-clamping and other motor-issues which had got so out of hand on the Citalopram. It has indeed reduced the motor issues substantially. It is not as effective as an ANS stabiliser in my body as the Citalopram was, but the side-effects are way less. Overall it is the best of the three that my doc’ and I have trialled in my body so far.

Now I’ve just got to figure out why I got worse early in the year. Was it really humid in January?! O.o



10 thoughts on “Autonomic stabilisation (attempt #3)

  1. Love your blog its saving my life at the mo as waiting for testing now for 6 months boo say I should get an appointment by Nov (London ) Yea. Im thinking I get worse when the air pressure is different but haven’t managed to figure out if its high or low pressure brain fog I shall have to have a friend do a…… aaah sitting now trying to think of the word bloody brain…. anyway work out for me if I’m worse on high/low pressure days. Thanks for what you do wobbly hugs 🙂 Woody.

    • Hi Woody, I’m so glad that I can help in some way, the London at UCL team are the top autonomic spec’s in the country so I’m glad you’ve got a referral there 🙂

      The baroreceptors get affected with these conditions so the air pressure does have an impact but it varies from individual to individual how much of an effect. I would recommend noting on the calendar when your bad days are and then you can check that against whether it was high or low pressure afterwards. Hopefully that will give you a clearer picture to present to the doc’.

      Wobbly hugs right back atcha, x

  2. Hi Elle, if you want to get rid of your powdery mildew problem just mix 1 part semi skimmed milk to 3 parts water and spray it on….tada all gone 😀

  3. Elle, I was just about to ask my Dys clinic PA whether or not barometric pressure could be a big trigger? Oy! On days that are icky outside I’m a bedridden mess. Can’t say I won’t be a mess when it’s nice too, but…seems to be a general trend.

    So good to know that something is working for you and the side effects are somewhat tolerable. You’re amazing, hun. Keep up the research!

    Gutsy Girl

    • Yes, the baroreceptors get affected. Some of us get off quite likely (as I have been lucky to in previous years) but I also have CRPSer friends who are more reliable than the weatherman!

      Thanks Gutsy, right back atcha hon, xx

  4. Hi Elle, I have been sharing your posts for quite sometime on my facebook support group Living with RSD and on Twitter. Yesterday I joined you as a fellow Blogger! Woo Hoo!
    This post rings very true to me. I became new to POTS 3 years ago and havent been much for being verticality since :/ My CRPS is sort of old news but I have new head pain, constant migrain and CSF (like chiari) type issues that are nwere with the POTS so I’m with you trying to gain a sense of control. Here is hoping next summer will be my first summer outdoors and not on the floor 😉 lol.
    Hope you pop in for a visit sometime. See you on the blogosphere (now I get to say things like that too!)

    • Hiya, I’m so glad that you have felt that my posts have had some help to offer fellow patients, that means and awful lot, xx

      Your first post on your blog is lovely, I look forward to reading more 🙂 I love being part of the informal network of bloggers and it’s great to hear that you have come to join us (sounds like some sort of secret club, har)! Our fellow patients around the world will be grateful for your insight and input, especially with your years of experience that you have. Whatever happens next summer we can celebrate (from the floor if we need to 😉 but hopefully outdoors 🙂 ) your first year of blogging. It’s something that I really wouldn’t be without now and I hope the journey is a heart-warming and a beautiful one for you too. Much love and oodles of best wishes from me, x

      • Wow, thanks so much for your encouragement Elle!
        You are one of my “spoonie” blogger heroines, so your positive feedback is a heartwarming, extra spoon kind of awesome 😉
        Hoping you continue winning in the “battle for verticality!!!” I’m by your side cheering you on (or like you said, on the ground next to you).
        Thank you for inspiring sickos everywhere and educating us along with our freinds and family.
        Be well,

  5. Pingback: My phenylalanine experiment | Elle and the Auto Gnome

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