Can You Test For CSS – Central Sensitivity Syndrome?

a lab icon productsIn the Healing Plan (HP) and on a previous post, I have discussed the fact that many of us with multiple sensitivity, chronic fatigue, fibromyalgia and chronic pain are probably suffering from some form of Central Sensitivity Syndrome illness. 

So, of course, I started trying to work out if we could get any clues. What could we test to see if we were too-turned up? Here’s a bit from the HP that might help – there’s more in the Plan:

What we’re looking for here are clues about what the sympathetic nervous system is up to. Is the dial turned up?

We can start by checking for neurotransmitter patterns – is the glutamate high and the serotonin, dopamine and/or noradrenaline low? Are you over-stimulated with excitatory neurotransmitters and yet don’t have enough of the inhibitory ones to offset it?  

Some researchers have suggested looking at the catecholamines  – that’s dopamine, adrenaline (epinephrine) and noradrenaline (norepinephrine) – and others say, if on an organic acids test Vanilmandelate and Homovanillate are high, the person is likely having a heightened sympathetic nervous response and the dial is up, especially if the serotonin marker 5-HIAA is low.

Happily, I have persuaded one of the labs to list the dried urine ZRT NeuroAdvanced test, which includes all of these markers including the VMA, HVA and 5-HIAA below so I reckon this could be termed our CSS test, or as close as we can get to one currently (I am taking a bow…!).

Looking at the adrenals can help too. Seeing cortisol levels on a DUTCH test might be useful. You want a clear picture whether metabolised cortisol is high or low.

In general, these are the two patterns to look for – and to get this you would need the ZRT NeuroAdvanced test and a DUTCH Adrenal Advanced preferably.

I am not an expert by any means and I am feeling my way a bit here, but this is how I might interpret the tests in terms of confirming CSS and relevant treatment; I hope it gives you some clues as to what form of treatment might be best for you. There’s a lot more detail in the Healing Plan in terms of lowering Substance P and things to watch out for in treatment:

  • If adrenaline, noradrenaline and/or dopamine are high and/or HVA and VMA are high with 5-HIAA low and metabolised cortisol is high – that is an acute stress CSS picture to me and this person definitely needs calming down before the body becomes tired out by it all. I would use the Lowering Cortisol advice and protocols in the Adrenal Plan (TGF version preferably) and the amygdala-calming techniques in the Healing Plan.
  • If adrenaline, noradrenaline and/or dopamine are high and/or HVA and VMA are high with 5-HIAA low and metabolised cortisol is low – this person likely has CSS and needs calming down sort of therapy like the Healing Plan. This is the pattern most often seen in PTSD. These people are hyper, anxious and reactive internally, but shattered.
  • If adrenaline/noradrenaline/dopamine are low and cortisol is low, the person is flat, fatigued and needs adrenal boosting as this is more an adrenal fatigue type picture. Use the Cortisol Boosting advice and protocol in the Adrenal Plan.

No More ARG Zen: Alternatives For You

200 mg of ZenFor those of you following one of the Adrenal Plans, you will know about the brilliant anti-anxiety, cortisol-lowering Allergy Research Group Zen product. It’s worked for most like a dream. But it has just been delisted in the UK – aargh!! I wish they would stop doing this. The reason is because we now not allowed to sell straight GABA, it seems; a bit like we can’t have pure DHEA in the UK – which is actually not a bad thing in my book, but that is a whole other story.

I do actually prefer encouraging the body to make its own substances like oestrogen, cortisol, DHEA and GABA etc where possible because that way the body can decide how much it needs. Doing otherwise is a sort of form of HRT – a replacement therapy – rather than a boost the production therapy, like using 7 keto-zyme as a precursor for DHEA rather than too-strong-in-many-cases straight DHEA itself, for example or giving oestrogen or progesterone for hormone difficulties instead of checking and boosting the adrenals. That said, sometimes needs must and that’s when I’ve used it.

OK, so up to now, we have used straight GABA in Zen to increase GABA levels in the nervous system and brain. GABA is the key inhibitory neurotransmitter and is therefore very calming; some people call it the body’s Valium. Essentially, we were using it in cases of acute stress adrenal profiles to lower the stress levels and decrease the need for the adrenals to pump out cortisol – simply put: in a nutshell it was to lower stress levels when cortisol was high.

So, now Zen has gone, we need to find other ways of doing that. Obviously, it goes without saying that this is in addition to the usual lowering stress techniques like meditation, yoga, breathwork, controlling your blood sugar, ensuring magnesium levels (known to increase GABA itself) and your B vits.

The other thing we need to say is that I always prefer you do a neurotransmitter test and work with a practitioner when using these sort of things, please. These are complex supplements, designed to support and change brain levels of some key elements. Always best to know what you need rather than just stick stuff in.

So, that said, here is a list of your possible alternatives and I will change the Adrenal Plans accordingly for you too. I offer a few ideas so that you can choose what might suit you best. As always, start low and build up, trial to see how you get on and follow all the manufacturer’s – and your practitioner’s – instructions.

A straight alternative for now to Zen would be Quicksilver GABA with L Theanine, exactly the same as Zen but half the strength. Four pumps equals one capsule of Zen. I assume that will go soon too. Not TGF. You can find a lot more info on it here.

Next best, and the one I will be using in the Adrenal Plans, is NeuroScience Kavinace which includes what GABA is made from in the body plus taurine, which is also a known precursor for GABA production. TGF safe – yay! Here’s a bit more info on this one for you:

Neuroscience Kavinace 120 caps combines two powerful ingredients that together effectively address symptoms of stress, anxiousness, and sleep issues. This formula contains the GABA derivative 4-amino-3-phenylbutyric acid, which easily crosses the blood-brain barrier and acts as a GABAB agonist.*1 Kavinace also contains taurine, which functions as a calming amino acid.* Taurine is a GABAA agonist and may increase GABA levels by increasing synthesis, preventing breakdown, and blocking reuptake of GABA.*2-4 Kavinace also includes vitamin B6, an important cofactor for the synthesis of GABA.

It’s a highly specialist product that one so not cheap. If you need a cheaper alternative, you could of course take Taurine or L-Theanine on their own.

Taurine is often used at 500mg twice a day on an empty tum to support GABA production. It’s the most often used supplement for GABA-calming. ARG do a 500mg version here. TGF.

Or, Higher Nature do L-Theanine 100mg. There was 100mg per capsule in Zen. TGF.

Interestingly, L-Theanine works partly by blocking glutamate receptors but can raise dopamine so if it makes you feel more anxious, I’d be testing your neurotransmitters to see if your dopamine is high – which it can be in CSS (central sensitivity syndrome) – ME/FM, chronic pain and sensitivity type patients, take note.

Finally, when I moaned at ARG, who are acutely aware of most of my TGF patient needs by now!, they reminded me that liver is a precursor food for GABA. So, munch more liver or take a liver product – I’ve actually got some of this to try myself for other reasons, but haven’t dared yet as I can’t stand the stuff ;).

Anyway, I have partly shared all this with you so you can make choices, but also to show you what exactly goes on in my day to day life of creating these plans and protocols for you! It’s not as easy as you might think – especially when the rules keep changing!

To finish: you might find this article useful if you are suffering anxiety as it gives a good overall rundown of what to do and consider:

How to Reduce Anxiety and Stress

And see my factsheet on Stress, Anxiety & Depression here.

Hope that helps; I’m off for a lie down! Meantime, here is the info on recommended suppliers if you need it – I just remembered that right at the end!

DUTCH Adrenal and Hormone Tests

I spent a whole day this week assessing the new DUTCH adrenal and hormone tests for us, so thought it might be useful for you if I put down my thoughts about them.

DUTCH stands for Dried Urine Test for Comprehensive Hormones and I’ve had them on the shop for quite a while for you – because you asked – but I always like to immerse myself in new tests to make sure we have the most up to date, valid and treatment-practical offering there for you. And so I can understand and help you with them, of course.

Anyway, my thoughts in case they are useful..this was the question I was really trying to answer for us:

If you want to test your adrenals or hormones, is it now better to use the DUTCH tests?

Well, yes and no.

In short, I think there is real value in the extra adrenal info you get (more of why below), but the hormone elements included in the DUTCH Complete, Sex & Metabolites and Cycle Mapping are pretty comparable to the ones we already do with Genova: the Complete Hormones and Rhythm respectively.

However, the DUTCH is much cheaper (when they do the combination tests), is dried urine so a bit more convenient than collecting 24 hours’ worth of urine and has a lot more guidance for people who are on meds and supplements like HRT to test effectively, and for those with irregular cycles – the bane of my life with the Rhythm!

On the down side, the reports are really complicated and even scared me until I ‘got’ them. You are more likely to need interp guidance.

To clarify, there are several DUTCH tests:

The DUTCH Adrenal – which gives you the free cortisol in 4 measurements and total, the same as the Genova Adrenal Stress Test, but it also gives you the adrenal metabolites which can give you a much deeper picture if you need it.

DUTCH Sex & Metabolites – which gives you info on the sex hormones: oestrogen, progesterone and androgens (inc DHEAs and testosterone metabolites).

The DUTCH Complete – which gives you all of the adrenal and hormones as above. Sort of the new DUTCH Adrenal plus Genova’s Complete Hormones – much cheaper and the best all-round test for men and post menopause.

The DUTCH Cycle Mapping – this is the monthly cycle look at the hormones, much like the Genova Rhythm test we know and love.

The Dutch Complete with Cycle Mapping – all of the above! The most useful test in my view especially for women still having period cycles. And, of course, the most pricey – but far cheaper than the equivalent separate tests from Genova (which would be the Adrenal test, Complete Hormones and a Rhythm).

Phew. I am now going to be recommending the DUTCH Complete with or without Cycle Mapping because it gives you loads of the same and more info for less money than combined the Genova tests. And, I am recommending the DUTCH Adrenal test as a more complex look at those.

 

What’s the benefit of the adrenal metabolites?

The normal 4 sample saliva adrenal test is great at showing you the daily pattern of free cortisol – and you could only do that with saliva until DUTCH. Then, they discovered you could get comparable results from a dried urine sample too – although there hasn’t been anywhere near as much research to prove that and there has been a LOT of studies backing up the standard salivary test up to now, so both are probably valid.

The free cortisol and daily pattern gives you a good indication of what might be going wrong somewhere with your adrenals and, having done it for over a decade, I have found it very reliable. However, we have to acknowledge that free cortisol is a very small amount of what is actually available in the body so, in some cases, there might be something hidden going on.

In the DUTCH Adrenal, you also get the adrenal metabolites and an idea of inactive cortisone. Why is that important?

Well, say you had someone who looked on the normal adrenal test like their cortisol was low, you would think they had low production of cortisol. However, if you looked at the metabolised cortisol levels and they were high, that might suggest instead that their free cortisol – what’s measured in the normal adrenal test – was low but their overall total cortisol production was high. That could be important as someone might be actually making too much, or they might be not clearing it from the body well.

Of course the body doesn’t know the difference and high cortisol is high cortisol. High cortisol means inflammation, belly fat, stress etc.

Or, say someone was making a lot of the inactive cortisone. It might be that their free cortisol looks low but downstream their metabolites suggest the production looks OK in total. Then you see they are converting a lot of it to cortisone so that person is making enough cortisol itself but needs to stop converting so much of it.

I told you it was complicated!

Anyway, the upshot is that I think the extra metabolites info you get on DUTCH could prove very useful. It seems to me from reading what other US based practitioners are doing (it’s not quite so used in the UK yet that they are using it for when people don’t respond to the normal adrenal protocols to dig a bit deeper. I think that is right, although I can see the usefulness of getting the extra info at the start too.

So, conclusion overall is that I will continue to offer the usual Genova salivary adrenal test which I think can give you a good snapshot – and all the protocols I’ve used in-clinic successfully for over a decade are in the corresponding Adrenal Plan for you – but offer the DUTCH for those who want a deeper look either at the beginning or later on.

There is, of course, quite a large difference in price too: £82 versus £179 (the DUTCH has just come down happily from £199).

With the sex hormones though, I will swap to DUTCH as you get the same info for much less money. Reports aren’t quite as good or useful but as long as we can interpret them, that’s fine!

As such, I’ve updated the shop pages. See here for Adrenal Tests and here for Hormone Tests.

My head hurts – hormones always do that to me, in more ways than one since I had flat adrenals, insulin resistance and PCOS 😉