My phenylalanine experiment

Feeling hopeless and unmotivated…what the…? I always had the motivation to do my daily paced physio’. For yeeeaaars. It’s towards my quality of life through pain management so why wouldn’t I?

Brain chemistry may be part of the problem, though….

Brain power

When we’re chronically ill we tend to get through a lot more neuro-chemicals than we used to. There are constant symptoms and sussing how to manage them as we go along – should I attempt this now or later? If I do it now then this, but if I do it later then this. If I take that med/supplement or eat some food or do that physio first then it will impact it like this or with those variables maybe like this. So I’m thinking maybe I should do this but with these provisos and that back-up and constantly monitor symptoms and be ready to adapt at any given moment as things pan out…. etc etc. There is a huuuuge amount of chemicals getting used up just trying to do the most basic of things. Then if we try to do anything other than the usual getting through the day stuff we decline faster and take longer to recover.

Back when I was studying I found that I will consistently lose my brain if I use it. Not the adage we more often hear of ‘use it or lose it’ eh? The more I use it (more time, more intensity, more challenge – any of those will do it) the quicker I’ll lose it and the longer it will be down for. My fellow CRPSer and blogger, Isy Aweigh, employed her nurse skills and suggested I need more dopamine to help my brain replace the neurochemicals I was using up. To create more dopamine, I need a source of phenylalanine. Us humans can’t make it internally, so we need it from food sources. I’m a veggie so meats are out, but aged cheeses are another source. And they helped. Significantly!

Dopamine.JPG

Created for this post by the Hypermobile Hobbit

It’s several years later though and my neuro’ dysfunction has been telling my immune system to react to all sorts of things, one of which is cheese so that’s that one out of the window!

I was chatting with the same pal the other day about my uncharacteristic lack of motivation and overwhelming sense of hopelessness about how I simply can no longer Brain long enough to do the research work required to gain any useful health support from medical practitioners. Guess what I might need? Yup, dopamine! Seeing as I’m still a veggie (that’s not gonna change) and that I can no longer eat any solid cheeses I’m quite possibly deficient in the phenylalanine that I need to manufacture the required dopamine. It turns out there’s a supplement for it, who knew?!

Phenylalanine.JPG

Created for this post by the Hypermobile Hobbit

After doing a quick bit of research (very quick, my brain falls over soooo fast these days) I found that the natural source found in foods is L-Phenylalanine. It’s not only used to make dopamine though, it’s also used to make other neurochemicals: adrenaline (epinephrine) and noradrenalin (norepinephrine) but it would be weird if balancing neurochemistry was easy, right?! We always need to consider all potential impacts and contra-indications (negative effects on med’s we already take) of any new med or supplement before we start taking it. In my case my ANS-balancer is an SNRI which inhibits the re-uptake of norepinephrine to reduce my flavour of dysautonomia. I was doing well on it until this potential phenylalanine shortage so rather than mucking up any previous balances, the supplement should (if it’s needed) return my neurochemicals to their happier levels.

There is also the artificially manufactured D-Phenylalanine which may well help with the production of dopamine as well, but it looks like the science isn’t completely in yet. It may help with pain however, and the side effects do not outbalance the potential for me personally so the standard mixed DL- supplement looks like it’s a Go.

Symptoms of a deficiency in phenylalanine pretty much describe my current state. Confusion – ohhhh yeah. Lack of energy – in the extreeeme. Decreased memory – significant, noticeable and upsettingly so. Diminished appetite – er, kinda, less appetite and depressed so I’ve been eating sugary stuff on hand and am now unable to fit into my shorts this summer. Possibly any summer. My first significant over-waistband roll. Oops.

I also found out that more than 5,000mg of DL-phenylalanine per day can cause nerve damage. Soooo I’ll be taking less than that then!

I ordered some DL Phenylalanine (a combination of the natural L- type and the manufactured mirror imaged D- type) from my usual reliable supplier of quality supplements and I’m gonna see if it helps me at all. Recommended is 1 x 500mg tablet per day. Not sure if that amount is gonna give me much Brain Time but it’s a place to start. I consulted one of my science whizz friends (fellow blogger the Hypermobile Hobbit) and she has raised a very important question – what’s the ratio of D- to L- in the supplement I have? Good point. L- would be more readily used by the body, so I’ve asked the supplier and am waiting to hear.

First, I figured I should list my current issues so that I can look at a before and after picture. Here we go, this is where I’m at:

Before, circuits

  • Utter fatigue, all the time
  • No brain. Like, really no brain. I struggled to order two photo prints from the usual website we use. I managed two and then couldn’t understand the website anymore. Had to ask Magic Dude to take over.
  • When I’ve got no brain it kinda hurts. Sort of like a headache but different.
  • No idea what the heck is going on a lot of the time, can’t understand concepts, sentences, sometimes takes me awhile even to figure out the meaning of individual words.
  • Memory shot to pieces. Have got used to not remembering anything now. Whole events/days go missing. Previously I would randomly forget ever seeing entire films but it’s so much worse than that now. I even think of something like ‘I must tell Magic Dude this’ and instantly it goes – I have lost the thought less than a second after I had it and he’s sitting right theeeere, it’s not like I had to remember it for any longer than it takes to say it. Really distressing.
  • No motivation whatsoever. Just an overwhelming ‘it’s too hard to sustain’ and ‘what’s the frickin’ point, anyway?’
  • Endless migraine. Relentless. Can’t do anything that doesn’t send it soaring except for prop myself up on the sofa in front of the laptop raised on its over-my-legs stand and there’s very little I can do in that position because I mostly have no brain.
  • Want to bury myself in something creative but not enough brain to finish any of multiple blog posts I’ve started over time. Tried sewing and it’s great but it sends the migraine soaring so can only do that for a short while once a week or so if I’m lucky.
  • Lots and lots of physical health symptoms that are hard to grapple with but I’m not listing them here as that’s not the focus so much as how I’m dealing with them (or not). I’m down in the dumps about coccyx pain being permanent, about near-fainting all the ruddy time, about not being able to choose to do anything useful or anything nice/fun, about not being able to go to Tai Chi classes or even manage any at home since my fall injury a year and a half ago. Yeah, really really down for a long time now. Not like me at all but I’ve been avoiding everyone online because communication has become so hard. I’m on a veeeery long waiting list to see a neuro’ and trying to cope in the meantime. Coping isn’t viable so I’m aiming for ‘exisiting’. That’d be a win, right?
  • Being near fainty all the time means I’m not safe to drive. I can’t get out of the house at all. I am completely independence-free. I managed to drive round the corner to collect prescriptions a couple of times in the past year or so but it took all day to try to get my body functional enough for those few minutes of driving and then there’s the lengthy negative health impact of that to work through afterwards.
  • Coming up for 19 years with this neuro’ condition and this will be the first time I’ve *ever* been referred to see a neuro’ – see why us CRPSers feel so flipping hopeless at times? It’s hard bloody work trying to get basic care because wiring issues are barely even touched on in medical school. Plus – most neuro’s are brain neuro’s and don’t deal with wiring anyway so this eventual appointment will either be really helpful or an utter waste of time and end of the road on any medical help for me. I could cry. But I’m too numb or dead inside or something.
  • Footnote: Magic Dude is a, er, magic dude! He’s been getting me out of the house whenever he can in any ways he can think of. I have noise reduction ear-plugs which reduce volume and help my processing and migraine management. So he’s taken me to the cinema, a concert, the Outdoors. We’re sick of sitting in coffee shops but that’s all I can do most of the time. But coffee shops exist within garden centres so that adds some extra interest (and buying plants is a temporary retail high). I’ve posted pics for my friends of anything I’ve seen outside the house to share that moment of joy but realise that doing so hides what’s really going on. But there’s nothing they can do anyway, and I’m struggling to read and understand stuff as well as piecing words together to form a reply, so messages can actually be quite stressful if they require a reply.

 

Oh. I’ve just re-read that list and realised that it’s basically what was happening when my Mum was trying to suss stuff out, got totally wrong concepts about me and disowned me despite my repeatedly saying that I didn’t understand what was going on. Okay. Arse! I’m back there then, eh? Big neuro downslide. Right. I came back a fair amount from that one, let’s see if I can pull the rabbit out of the proverbial hat this time as well with more help than just flukey luck back then when I found I improved a tiny bit from (unknowingly phenylalanine-ish) cheese sandwiches!

rabbit out of hat

 

Depression is kinda like drowning – it doesn’t look like what you think it looks like. It’s smiling whenever I can, making lots of jokes, going full-on distraction when I’m alone (Lord of the Rings Online), pretending I’m okay just to try and get through until the appointment that’s many months away, yet to be scheduled and which might utterly let me down.

But it might not. ‘Just keep swimming’, right? Ugh!

depression doesn't look like what you think it looks like

Next morning: I just re-read this to make sure it made sense then opened something else up on my computer. I felt like had been doing something else but couldn’t remember what and it was really bugging me. I had been re-reading this. Like, a second before and couldn’t remember doing it. And yet after writing this post yesterday my brain accessed the disowning distress from years ago, pulled Bjork’s ‘State of Emergency’ out of it’s vaults and sang it to my dysfunctional fight or flight self til 3am. Gawd this supplement had better help!

.

Okay, the DL phenylalanine arrived yesterday: 25th  May 2018.
Let the experiment begin.
I’ll come back and add how this list looks in a couple of weeks….

 

After, circuits

Day 1: Shortly after taking the supplement I found myself skim reading two articles in the Psychologist mag, whuuut? Then my brain keeled over, back to ‘normal’.

Day 2: Already using my brain trying to post this when I took the tablet. That weird head tensiony not-headache going on. Not sure I’ll get much impact this morning.

…..

20th June 2018

Okay. Phase 2 started about 5 days ago. Here’s where I’m at:

No major changes on just one tablet per day so phase 2 is an increase to two (one after breakfast and one after lunch, though with health varying these meals vary pretty wildy timewise).

However, I didn’t mention something in my list of symptoms above because if I listed all my symptoms you’d fall asleep trying to read them! Yet it seems to have improved a bit since taking the phenylalanine. No idea yet whether this is causal or coincidental, time will tell.

The unmentioned issue is that since my fall injury I’ve been reacting badly to certain things. I experience near-syncope, nausea, facial drooping, limbs powering down, slurring, eyes flickering independently of each other, dystonia in my legs. The triggers all seem to be when there’s too much for me to process i.e.:

  • motion (in a car, worse on narrow and/or windy roads, first person gaming)
  • flickering lights (florescent, daylight through trees when I’m travelling)
  • audio input at the same time as motion impacts harder and quicker (e.g. music, radio, audio book)

I’m hoping the supplement is related to the improvement in how well I cope with motion. All I can do is keep working through phase 2 and see what happens.

 

A non-neuro neuro? It’s probably quantum

Sometimes I get a medical letter through the post that just makes me laugh! Yesterday was one of those days…

If you have looked at my ‘What is CRPS?’ page you’ll know that CRPS is down to the autonomic nervous system (ANS) starting to behave in a faulty manner. And you’ll also know that the ANS is part of the neurological wiring in our bodies. So…. seeing a neurologist is a fantastic idea, second to seeing an autonomic specialist, right?

Here in the UK the primary doctors can’t refer patients directly to the tertiary level specialists, (which includes autonomic specialists). They can only refer to the secondary level ones, like neurologists. I wrote a post fairly recently about my need to get referred to an autonomic specialist here. Well, the update.. is that when I saw my doctor about it, (all prepared with graphs, a symptom list and my explanation of why I need to see someone-who-has-a-clue, all backed up with research papers), he surprised me by telling me that he “thinks it’s a very good idea”! Lawks!

But getting to see an autonomic specialist means that I first get referred to a neurologist, who would then be able to refer me on. Sounds like a monumental waste of time, and the neuro’s agree. That time could be spent seeing patients they can actually help, instead of filling in cursory paperwork.

Nonetheless, that’s the way the system is, so I was waiting to be informed about an impending neurology appointment.

Yesterday, I received a copy of the letter that the neurologist has sent in reply to my doctor. Here’s a quick snippet…

“It was not clear from your letter the link between the previous diagnosis of regional pain syndrome and recurrent autonomic nervous system problems.”

So…. RPS? What happened to the C? Has the neurologist even heard of CRPS? How can he not know that autonomic dysfunction is the fundamental foundation of the condition?

Even weirder…. He’s not a trainee or lower level neuro’ who could almost be forgiven for not knowing yet, he’s a…. (wait for it)…. consultant neuro’…..! ?

Have I been transported to a parallel universe where neurologists are not trained in neurological conditions? Is this possibly an entirely quantum experience?!

 

Well, it’s either a sci-fi moment, or it’s a regrettably familiar one. *sigh*

What he does say, however, is that my doctor should refer me to the tertiary level dude. Yes. We know. That’s why my doctor referred me to you, Neuro-Bloke. But maybe that letter could be enough? Or does the referral form have to be filled out by the neuro’ himself? I don’t know. But I shall find out.

My doctor is away at the moment and so the surgery have booked me in to see the stroppy odd one. (There’s always one, right?) 😉 So, come Friday morning, I shall trundle off down the road, clutching the letter in my hand, (and probably some research explaining the condition basics, or maybe I’ll just convert my ‘what is CRPS?’ page into a doctor ‘idiot board’? Hmmm, now there’s an idea), and find out where on earth we go from here.

It’s an interesting journey having an esoteric condition. It takes a lot of continued effort to actually get myself visible on the medical radars. Silly, really. But there you go. That’s just the way it is.

The other thing that happened as a result of my last doctor appointment was that I ended up on a brand of Selective Seretonin Reuptake Inhibitors (SSRIs). These are sadly stigmatised as a result of their more widely-known use for depression. Depression itself should not be stigmatised anyway, but unfortunately that’s the way it still is, for the most part. (If I wrote more about what I think on that subject here it’d turn into a lengthy post)! But they are actually used for a lot more than that, for example… pain control (very relevant), …and something I only found out this year, which is that they are used to help try to stabilise the ANS. Oh my goodness, reeaally relevant.

Serotonin levels vary in the brain, and the receptors in the brain pick up on this and react accordingly. It affects the behaviour of automatic processes, including heart-rate variability. And it’s the heart-rate issues that are part of why I feel so close to fainting a lot of the time. Heart-rate goes up… blood pressure drops… near-fainty experience. Although, to be fair, we don’t really know if the increase in heart-rate is causing my blood pressure to drop, or the other way round. It may well be a bit of both at different times for different reasons. The resulting lack of oxygen to the upper body probably has a fair bit to do with the worsening cognitive issues, too.

SSRIs flood the brain with seretonin, leaving the receptors  with no variations in seretonin levels to react to. The ANS becomes more stable, (fingers crossed), and so the automatic processes should stop getting affected so much.

So, seeing as I most likely had weeks (or possibly months) to wait before I got to see the autonomic specialist, and it had got to the stage where my day-to-day experience was truly untenable. I needed something to be done, and I needed it asap. So my doctor ‘bullied’ me (his word) into it a bit, because I have such an aversion to getting incorrectly stigmatised as needing anti-depressants. Anyone with a chronic pain condition will be familiar with the ‘it’s all in your head’ erroneous concept. And getting wrongly labelled as needing medication for depression is the last thing we need on top of the, already appalling, lack of knowledge about our conditions anyway. He has written ‘trial medication’ on my notes and said that was enough. I think that’s too vague. It doesn’t say what it’s trial medication for…. pain control?…depression?… not many doctors will even be aware of the ANS stabilisation factor, so it needs to be there in the notes. Grrr. I want ‘trial medication to try to stabilise ANS’ on there instead, but I don’t suppose there’s much chance of getting the other stroppy odd doctor to amend it for me! (Especially if he finds out he’s being referred to as a S.O.D.)! 😉

I’ll update you on progress in a few weeks, as the brand I have takes about 6 weeks to reach optimum effect. Thus far the summary is: unbelievably awful side effects initially, followed by apparent magic, more recently followed by decline back into spinny-headedness. So I shall wait and see before I pronounce judgement on my own personal SSRI experience.

Well the sunshine is glorious here, (unusually 😉 ) so I’m off to spend my physio’ time sorting out the freshly aired washing. Exciting, eh?!

Big hugs from me,

x