Neuro-vascular autonomic consultant in London

Okay, so April has been manic. Flare after flare, simply owing to the amount of appointments I had to get through. One of these was the long awaited autonomic consultant appointment at St Mary’s neuro-vascular department in London.

Prior to the consultant appointment I had to go through a battery of tests. This took two days (during last November) and I was a wreck by the end of it, but I was really pleased that I did it!

.

Day one:   Get wired up with a portable monitor of blood pressure and heart-rate.

I was to wear this for 24 hours.

Every 20 mins it would beep at me and the arm cuff would start inflating to take a reading. If I was doing a physio’ walk I had to stop and stand still as it did this, but most of the time (of course) I was sitting or lying down anyway. Every time it did this I had to scribble down my symptoms at that moment i.e. extent of dizziness, nausea etc. So I had paperwork and a pen to hand at all times and after a few hours of this it was getting pretty tiring. My brain fogs up and needs to be left alone to recover. Asking me to get thinky and writey every 20 minutes is a crazy request. But I’m a stubborn ole whatsit so I did it, of course! (And paid the price, but hey, that’s what happens at appointments, eh?)!

I also had to do one test where my blood pressure and heart rate were monitored whilst I was lying down but cycling with my legs (trying to keep an rpm dial in a steady position). More on this later.

We went straight to the hotel room after the appointment, (we even got minty chocolates on our pillows, ooooh)!

And this was one of the cheaper hotels.  London, baby!

And this was one of the cheaper hotels.
London, baby!

In addition to the every-20-minutes lark there were also specific tests I had to run myself. They were set for certain times of day. Things like lying down – take blood pressure (bp) and heart rate (hr) – then sit up – take bp and hr – then stand up – take bp and hr. Readings after eating. Readings after walking. Readings after climbing a flight of stairs. Readings before sleep, Readings after waking. Readings. Readings. Readings.

Magic Dude was on hand to get me everything I needed to get through the evening. Hot water bottle and painkillers were also invaluable!

Magic Dude was on hand to get me everything I needed to get through the evening. Hot water bottle and painkillers were also invaluable!

I cannot describe adequately how exhausting this is for someone already trying to cope with problematic chronic conditions as well as the aftermath of a long ride in the car as a passenger and an appointment involving walking/sitting/talking. But while I was up doing one of these tests I got Magic Dude to take a piccy of the tech. Some kindly soul had knitted a monitor bag which matched the colour of the arm cuff, awwwww.

ECG monitor, with matching bag and arm cuff!

So getting out of the hotel room is a toughie. We made it round the corner to a local Italian. The manager of which was a real poppet when I explained why I was using a second chair to put my legs up. Bless his cottons, “You can rest as long as you need to” he said, even after we’d finished eating and the tables around us were beginning to get occupied. What a darling.

London, baby!

London, baby!

Back to the hotel room, painy legs so fun has to be found. The bathroom mirror was surrounded with many white bulbs as if I was to be slapping on stage make-up in preparation for a great stage entrance. (Ta-daaaah, the beeping patient enters stage left!) And, as I really don’t get out much to find out about the existence of hotel paraphernalia, the room slippers were a novelty!

Hilarious one size 'fits' all hotel slippers. The toenails are orange for CRPS awareness month last November :-)

Hilarious one size ‘fits’ all hotel slippers

(The toenails are orange for CRPS awareness month in November). 🙂

The pre-inflation warning beep actually stops at 11pm. Supposedly to let us get some sleep. But the monitor makes growly noises when it’s working. So I put in some earplugs (you can get ones that stick over the ear-hole rather than push in which reduces pain that some of us patients get from earplugs), I also put the growling monitor in the drawer of the bedside cabinet with just enough room for the air hose to fit through the opening. But I have no idea how anyone with chronic pain is supposed to sleep through having their arm crushed hourly between midnight and 6am, and every 20 minutes the rest of the time.

A gold star to anyone who can guess what kind of state I was in the next day! (Here’s a clue.. 5am: adjusting pillows under legs because the CRPS pain went off the scale). (Here’s another clue: sleep deprived zombie mode)!

.

Day two:   Return portable monitor along with my tome of related notes. Then undergo multiple tests.

The last of 6 pages (3 of exercises with readings, and 3 with notes every 20 minutes)

The last of 6 pages (3 of exercises with readings, and 3 with notes every 20 minutes)

My last words on this sheet read, “…really foggy and groggy. Really tired of this now.” (On a side note, I suspect the poor consultant felt the same way on trying to read my writing. My writing was described by my school biology teacher as “characteristic”, and by my beloved school physics teacher as looking “like drunken spiders” had walked across the page)!

So…. the tests…

They are designed to see what’s going on in the autonomic nervous system (ANS).

The ANS is made of of two parts that balance each other: the sympathetic nervous system (SNS) and the parasympathetic nervous system (PSNS). They work in tandem, and when they’re working together the ANS is a smooth-running super machine. With the sympathetic kicking in to do things like raise heart-rate, increase oxygen supply etc when required (including the fight or flight system, hence my feeling of being stalked by Bertram the bear), and the parasympathetic doing all of the calming down and making sure that mundane aspects, like digestion, keep on happening. Together they work beautifully, but if they are not balanced, we have problems.

Pinned to the wall units in the testing room were examples of hr and bp outputs for each of several autonomic conditions (e.g. PAF, POTS, NCS), and each had a distinct pattern, which was intriguing to look at as I lay there between tests, but I can’t remember anything else about them as I was shot away by the end of all the tests!

These tests are designed to see what the separate behaviours and responses of the SNS and PSNS are, to figure out what’s going on in my body and how exactly I am ending up with all these symptoms, particularly the near-fainting, nausea, brain fog and gastro hassles (which I flagged up as the priority issues on my looong list of symptoms).

Of course, standing and sitting mean being upright and this can affect the blood flow. So to remove the effects of gravity in that way – all tests were conducted with me lying down. (The tilt table doubles up as a bed)!

So here are the tests I experienced, in no particular order (because I cannot remember the order!). For every single test my bp and hr was being constantly measured.

Test Bicycle: (which I did on Day 1) Lying down whilst cycling my legs (on an actual bicycle-like apparatus with changeable resistance levels etc) and trying to keep the rpm dial at the point indicated by the specialist nurse.

Test Squish: Holding a rubber cylinder filled with air in one hand – squish the cylinder to get the attached dial to stay in the same place (as indicated to me by the spec’ nurse). The catch is that the air is escaping, so to keep the dial in the same place you have to squish harder and harder to keep the pressure the same.

Test Exhale: Breathe out into a tube to keep the pressure dial on the same readout. One baseline reading taken when lying down and then another reading taken with the tilt table at about 20 degrees.

Test Argh: (the only one I didn’t do) holding a block of ice. It would have been covered with something, but as icing adversely affects nearly all subtypes of CRPS so would have been daft for me to agree to this. Especially as since then I have found that even getting vegetables out of the fridge hurts my hands. In true Gollum stylee…it buuurrrnses! So I didn’t do this test. But they had enough to go on, so they didn’t mind me missing one test, (apparently a lot of patients will miss one out).

Test Stress: Maths is often used as a stressor in tests. 😉 I was asked to start at 400 and keep subtracting 7, saying each number out loud. If I was wrong the nurse would tell me, and I would try the incorrect answer again until I got it right, then I would continue. (This varies for each patient as the numbers can be changed to make sure we find it difficult enough for them to be able to monitor a stress-ish response. Under brain fog circumstances it doesn’t take much for it to be hard enough, though)!

Tilt Table Test: Monitoring bp and hr whilst lying flat, then raising the table to about a 70 degree angle (so not entirely upright) and continuing to monitor along with noting down any comments from the patient about what symptoms are being experienced when. Also barefoot to check for colour change in the feet (which can indicate blood pooling).

The Tilt Table Test

The Tilt Table Test

Test Food: Two little plastic cups worth of nutrition drink made with cold whole milk  drunk through a straw as quickly as possible whilst lying down flat on the tilt table. Left lying down under a blanket for 45 minutes whilst the food is pottering through our system. Then another (much briefer) tilt table test.

.

By the end of all those tests I was a shot away, off the planet, foggy brained, mumbling, bumbling, vague creature who needed guidance down the corridor, bounced slowly off the walls but nonetheless had a rather sneakily good idea of filling up the hot water bottle from the coffee machine in the hospital canteen before the long ride home.

November journey home

On the motorway, and oh sooooo grateful for Magic Dude’s wonderful care assistant and chauffeuring skills, x

.

I had been forewarned that I might not get to see the consultant for 2-3 months, but in the end it was more than 5 months later.

.

The consultant appointment:   15 minutes of brief exchange, followed by thinking of lots of questions that I wish I’d asked at the time.

Consultant appointments always seem to be so short. 10-15 minutes seems to be the norm’ in my own small experience, though my primary care doctors over the years all seem to be under the impression that we’re supposed to get an hour or so. I have no idea why there is this discrepancy, and there’s nothing I can do about it anyway. 15 minutes is what I got.

The tests were to assess the level of SNS and PSNS activity to figure out exactly what is going on in the autonomic nervous system. It is important that they are carried out by a top specialist so that everything is taken into account by someone who really knows their stuff, (the tilt table test is renowned for producing both false positives and false negatives, so a specialist assessor is far far better).

So first of all… the consultant said that the tests do not show any actual damage to my autonomic nervous system. For other patients this bit of the appointment could also be to advise that they have a certain type of autonomic dysfunction. Either way it means we learn more about what is going on inside our bodies and it gives us more information to move forward with choosing appropriate ways to try and manage our symptoms.

So, for me, he didn’t want to put me on more medications unnecessarily (which fits with my personal preferences, too), and instead had other suggestions.

We know that I have autonomic dysfunction though, because a) it all adds up, and b) the meds my primary care doctor and I decided to try out actually helped. The meds I tried were a type of SSRI (Selective Serotonin Re-uptake Inhibitor) which are more commonly known for their use as anti-depressants, but they are also prescribed for pain management, as well as to stabilise the ANS. It stabilises the ANS by flooding the receptors in the brain with serotonin. This helps because our receptors get really sensitive to serotonin levels which makes our neural reactions to the levels more extreme than they need to be. That is, they over-react and we experience the consequences! By flooding the receptors with serotonin the levels become more consistent, so the receptors have much less to react to, which improves our symptoms. SSRIs are not the only medications that have a stabilising effect, there are similar meds which do the same for our adrenaline (norepinephrine) levels (SNRIs), a bit of both (SSNRIs), and probably some others that I’m not aware of, too. I started taking a basic SSRI a year ago and (after the first few days of hiiiiideous side effects) I noticed improvements on not just the near-fainting (which is what I was most desperate to address) but also many other ANS based symptoms, too. (I came off these meds for the days of tests, by the way).

The tests demonstrated that:
– my autonomic nervous system is not actually damaged (‘just’ wonky ANS signals, then!)
– my blood pressure is always too low
– they fiiinally have recorded proof of palpitations in my heart-rate variations
– they also have evidence of the blood pooling in my feet

So…. his recommendations are:
– prescribed salt tablets (I’ve previously increased my sodium intake, but it’s nowhere near enough)
– to continue with the ANS stabiliser as there have been improvements (I totally forgot to mention the side effects of the jaw pain getting worse and soft tissue getting affected as well as the joint)
– prescribed grade 2 compression tights in the winter (my feet burn so I need toeless ones, and my left hip is badly affected by pain when wearing tights so…. toeless compression stockings?!)
– that I  get stress ball to squeeze to help blood pressure increase when it is low
– to drink eeeeven moooore fluids (at least 2.5 litres per day, I think it was 2.5 anyway, who can ever be sure through brain fog?!)

He had me walk up and down, walk with one foot placed directly in front of the other, hold my hands out and splay my fingers (afterwards I wondered if he was looking for tremors, but he didn’t say so, so as I wasn’t suffering with them at the time I assume he thinks I don’t get them. Doh!). Then he asked me to touch my toes! I’m hypermobile,…. dooooown I went!

So, the other outcome is…. that he is referring me across to hypermobility specialists (also based in London as there aren’t many specialists of that level in hypermobility, either). Now, hypermobility isn’t just about being bendy. I know I’m bendy. I didn’t realise when I was younger as most kids are bendy. The weird thing was when other people stopped getting bendy as they got older. I just didn’t realise that most people over 21 cannot touch their toes (according to my lovely knee specialist a few years ago). Hypermobility also affects the autonomic nervous system. So all of my autonomic symptoms are also listed under aspects of hypermobility as well.

Which effectively means another avenue to explore – another angle I can take in trying to better manage and understand my symptoms. So it is a gooood thing.

x

Advertisements

20 thoughts on “Neuro-vascular autonomic consultant in London

  1. Pingback: Temporary cyborg and wearer of an invisible (purple) cape | Elle and the Auto Gnome

  2. Thanks for sharing all of the details! It definitely helps me to understand what other people with dysautonomia are going through!

  3. Could you get compression tights and cut the toes and tops off? I mean, would they still work? I’ve considered them to aid with my circulation but…
    pressure + winter chillblains from sucky circulaton = sad.

  4. Now, you have me wondering what being extra bendy means. I have never had loose joints, I don’t think, but I’m 61 and even with my overweight and arthritis, I bet I can touch my toes. i’m going to try now. Yep! I can. I am tighter, but it really wasn’t a problem, but I am short.

    It sounds like you went through the wringer, but I am glad you are getting help. You are young, and it sounds like you could have a good outcome with all this.

    • Thanks Deborah, yep, you are in the minority just for being able to touch your toes apparently. I like to have the flexibility as long as it doesn’t cause any extra problems. Hope your flexibility is a boon rather than a problem, xx

      I shall continue to battle onwards and keep my positive attitude, it’s pretty central to who I am so shouldn’t be a problem there.. I tend to bounce back from most things! Hope you’re doing well hon, big hug, x

  5. Hi Elle, I too am hypermobile and was diagnosed with the syndrome over a year ago after years of pain. I also have an autonomic dysfunction and have been told to do exact what they told you, increase salt, drink more water and wear compression stocking. This was just from my rheumy consultant who I see for Hypermobility syndrome. So strange who everything is linked and how fibro and CFS also basically come hand in hand! I’m just starting to cope now but can never remember my limits and always live the fight and flight way. 2 days in the English sun has had me bedded all day today! Good look at your HMS specialist. I would give anything to go and see professor Grahame at UCHL but no way of a referral from up north 😦 x

    • Hi Stacey, I’m so glad you got to enjoy some sunshine, us Brits have to take what we can get! 😉 I absolutely had to have an ice cream to mark the occasion of physio’ walk outside in the sunshine this past weekend! (Mint choc chip for me, om nom nom)!

      Yep , overlaps between CRPS, MS, ME/CFS, HMS/EDS, Fibro and goodness knows what else. It gives us a fabulously broad patient group to discuss options with. I used to identify with CRPS and chronic pain, but nowadays I feel more of a neuro and autonomic issues kinda patient, with a side order of pain. Funny how things change over time as we learn more, but the learning more definitely helps. You’re doing great if you’re beginning to get a handle on it after a year, it’s not easy changing our whole approach to our understanding of the best way to approach our days. Good on you ( *cheering loudly* ) 🙂

      By the way, I just did a quick search for hypermobility spec’s and yep, seems that London is the place to be. I’d like to hope that there are some others out there somewhere though, I’ll ask some questions and see if I can find anything out, xx

  6. love love love.from me too you !

    my feet are burning, i don’t no what to do anymore !!

    love from me to you,
    i want to hold you very close to me

    I want to die.

    it is over, it is over.

    els from netherlands.

    • Els, honey, sending you suuuch a big hug…
      My feet burn too, I can’t wear shoes in the summer, and I can’t wear socks unless I’m sat still in the winter! I try to avoid anything that heats up my feet or causes friction as that sets them off burning. If they get bad I raise them up to reduce the blood flow and I put some moisturiser on them because when they are wet the air around them can help to cool them. When they get really bad they itch like crazy, too. And I’ve met lots of fellow patients who have these problems, too, and they all try different things. There’s a lovely group I know of who are great for sharing experiences making suggestions for things to try to help. I’ll send you a message with the link.
      Love love love from me too, you wonderful big-hearted super artist you, xxx

  7. *giggling*.. Oh goodness. You have a wonderful way of creating a bit of an adventure out of what would genuinely be really challenging!

    Re the notes every 20 minutes could you perhaps use whatever electronic device you can get your hands on and record the experience instead? I’m sure that’s something you’ve already considered.

    Love the pictures, particularly the one with tech post it notes.. lol ‘Biggest size’ fits all seems more appropriate for the slippers eh.. lol

    • Hehe, thanks Louella, every day is an adventure here! ;-D

      Yep, another way of recording the data would have been nice (and for them too as they would not have had to decipher my scribblings!) but they had asked me to fill in their official forms so that’s what I did. (Maybe since having to read my writing they might re-think their request? 😉 )

      Thanks for the positive feedback, I love taking the fun view of things. Even with a chronic health condition there’s plenty to chuckle at (and sometimes the chuckling is a little more twisted, but that somehow just makes it funnier!?!)

      It’s lovely to meet you, xx

  8. Pingback: Hypermobility specialist appointment | Elle and the Auto Gnome

  9. Pingback: SSRI stabilisation effects on the autonomic nervous system, and my muscle tension side effects | Elle and the Auto Gnome

  10. Pingback: Autonomic stabilisation (attempt #3) | Elle and the Auto Gnome

What do you think of this post? Elle and the Auto Gnome welcome feedback, x

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s