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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Hypermobility specialist appointment

One of the outcomes from my neuro-vascular/autonomic consultant appointment back in April was that the consultant referred me over to one of the top two hypermobility spec’s in the UK. They are to be found at the University College London Hospital (UCL) in Euston Road, London, UK. My referral came through very quickly and I was offered an appointment this September which actually came around far quicker than I thought it would. (I must be getting older if time is passing that quickly, either that or I am having a lot of fun 😉 ).

That hypermobility appointment was on Tuesday of this week.

I had been sent some forms to fill out in advance….

UCL q', circle symptoms

I circled 30 out of 48, and wrote a note against a further two. Most of my friends with autonomic dysfunction said they would have circled a similar amount of symptoms.

There was also this set of questions…

UCL q', delete as appropriateI only answered ‘yes’ to 4 of these. Although I can do ludicrous stretches with my legs, can bend over to put my palms on the floor without bending my knees and have sublaxation of my shoulders and kneecaps, I do not have any ‘double jointedness’. Most of my hypermobile friends answered ‘yes’ to more of these than I did.

So that was the preliminaries. Now for the appointment itself…

The appointment was for 9.30am. In London. I live on the south coast. Eek! So the alarm went off at 5am… Magic Dude and I saw the sunrise on the way..

Sunrise on the way to UCL

Once parked up and braced for the usual extortionate parking fees we headed off to UCL. After nearly passing out in the bathroom I sat in the high ceilinged entrance hall and found that I had a tall wall of modern art in front of me to look at while I waited for the world to settle back into place…

UCL wall art

As we were fortunate enough to not get to caught up in too much rush-hour traffic we headed straight to the canteen for a coffee for him and a cuppa for me. As a long-time Tea Fiend I was a little disappointed with the size of my teacup! 😉

UCL coffee and tea

As with the neuro appointment, the appointment time given in the letter was not actually the time I would be seeing the consultant as they tend to take some tests beforehand. Here I was weighed, my height was measured and I was asked to head off to the loos to produce a urine sample for testing. There was nothing untoward in the urine sample but then again they didn’t forewarn me to hold it in for a decent first-wee-of-the-day sample so they didn’t really have much to work with! ;-P

Then the next stage was to see the consultant.

Consultant appointments for those of us with multiple aspects to our conditions basically means discussing only the aspects which fall into their specialist area. I had seen the neuro consultant, had the autonomic tests related to that and now I was with a rheumatology/hypermobility expert to discuss only musculo-skeletal issues. It can be pretty frustrating having to work in this way when we are used to the fact that everything is interrelated, but it’s just the way it is, they cannot make guesses outside of their area of expertise. They can, however, refer us on if need be.

So… I saw a super professional expert who began by finding out parts of my medical history that related to the injury that caused my CRPS and how the disease developed and spread through my body. A ‘what happened when’ question and answer session to help them build up a picture. As hypermobility can also cause issues with the autonomic nervous system (ANS) I was hoping that she could have some insights on the autonomic hassles I’m currently experiencing, but she was focusing on musculo-skeletal issues only so that is being dealt with separately (and I will write a separate post about that side of things).

I was twisted round, bent over, asked to walk up and down the room, had my skin pulled and all sorts! But the consultant was incredibly gentle and careful. I experienced no exacerbated pain from her assessment.

The outcome was that I have localised hypermobility in my trunk. It’s possible that it is so localised partly because I have worked so hard at the physio’ generally but have lost some core strength owing to near-fainting (as it has prevented me from doing any abs-strengthening exercises for some time). As usual I was told that I was doing all the right things and that there was not much more that could be done because I’ve covered it all so well.

The suggestions that will be in the letter that gets sent to my doctor will be:

– a very small dose of amitriptaline a couple of hours before bed. The reason for this is to help me to get better quality of sleep which should impact positively on pain levels etc, and the reason the dose has to be so small is that it interacts badly with SSRIs (which I am currently taking to help stabilise my ANS). I will, of course, do some research on this before I have an appointment with my doctor to discuss it.

– aqua-aerobics. The reason being that the Tai Chi is fab’ physio’, but that the non-weight bearing of being in the water could help other aspects as well. (The original suggestion was swimming, but I can only thrash and sink so the aerobics enables my feet to stay on the ground! 😉 ) The simple problems here will be cost in finances and managing to get out of the house for more of my physio’s, plus cold hurts my body and swimming pools tend not to be very warm. Could be tricky, I’m gonna put this one lower down the list of priorities and work down the list towards it.

– that I am referred to a TMJ (temporomandibular joint disorder) specialist regarding my jaw problems (which are currently being exacerbated by my meds and this is part of what I will be writing about in another post very soon).

In addition to these suggestions I was sent for a blood test and an x-ray to give her more information on my health status.

The x-ray was specifically for the consultant to see if I have shallow hip joints (which I’ve been told before that I have, and it also runs in the family).

The bloods will cover a lot of angles, including B12 and vitamin D, and is even checking for low levels in certain things owing to me being a veggie. Pretty thorough, eh?

The overall experience was one of efficiency and care. Who could ask for more, eh? I’ve had some pretty awful experiences with hospitals over the years but this one had systems in place to cover everything that I needed that day. I commented to the radiologist about how efficient everyone had been and she chuckled saying “Really? You should have been here yesterday!”. Sounds like I was lucky enough to be there on a quiet day! 😀

UCL day, tea after blood test

Mulling the appointment over tea afterwards, Magic Dude said that the appointment wasn’t what he expected. He had been expecting some sort of advice or treatment that could help with my day-to-day experiences and pain levels. He was not prepared for a patient in need of help getting the ‘you’re doing great’ response.

I, on the other hand, have a habit of hoping for the best and preparing for the worst! My hopes for consultant appointment outcomes are generally to get more info’ and understanding on what and why. I’m basically looking for clarification. After all, it’s me at the centre of my healthcare – I’m the only one doing the multi-specialist thing in the middle. So it’s important that I learn more about what’s happening in my body to be able to explain it to other medical practitioners and piece it together with my existing understanding.

Essentially I’m looking for more pieces of the puzzle that will help reveal more of the picture. I’m used to dealing with surprised consultants trying to find out how on earth I know so much and I’m used to being told that I’m doing pretty much everything I can already. But I’m in this for the long-term haul, every snippet of info’ and advice counts, this is how I help myself when all the usual treatment suggestions are moot.

UCL hospital

Bye bye UCL hospital

If anything progresses from this appointment I will let you know. I know that several readers are heading towards hypermobility assessments as well so good luck on your journey, I hope that this helps prepare you a little.

x

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!

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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)!

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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.

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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

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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.

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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