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.

 

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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….

But….

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??!

Crikey!

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

x

Keep a Pharmacist in your health loop

I had to get a blood test today, so I collected my prescription from the nearby pharmacy at the same time. Whilst I was in the pharmacy waiting, I got called in by the pharmacist for a chat about my meds and supplements. Awesomeness!

It was great to chat with someone who really comprehends the problems we have with meds. I have mentioned it before and I’ll say it again:

Include your pharmacist in your health loop, involve them in your decision-making processes – they know more about meds and med combi’s than anyone else and they are invaluable to patients like us who are juggling multiple health issues with multiple internal systems and therefore constantly having to Sherlock our symptoms vs side effects, figure out meds, supps, nutrition etc for all of our various health issues in a way that they can happily co-exist with each other as treatments.

A good pharmacist is worth their weight in chocolate!

There were no concerns about my meds but I’ve decided to come off the magnesium supp’s. The mag’ was for the progressively worsening motor issues I had thanks to the first ANS stabiliser which I was one for over a year. My current stabiliser is way better for the motor issues (inc. spasms, jaw clamping, twitching etc) so to avoid in-taking too much mag’ I’m coming off it to see how the motor issues are with the more central-nervous-system-friendly ANS stabiliser that I’m on now. Good change. Thanks Ms Pharmicist. You rock!

Blood test thumbs up

UK peeps: This is an NHS thing so if you haven’t had a meds check-up for a year or more, ask your pharmacist about it. It’s well worth it. Even if everything med’-wise is tickety-boo, it’s always reassuring to know that it is.

Lotsa love from me,

x

SSRI stabilisation effects on the autonomic nervous system, and my muscle tension side effects

SSRIs (Selective Serotonin Reuptake Inhibitors) are one of the types of medication which can be used to help stabilise the autonomic nervous system (ANS). When our ANS is dysfunctional one of the things it can do is to over-react to varying serotonin levels in the brain. The SSRIs effectively flood the brain with serotonin so that there are no longer varying levels for the ANS to react to. Simple, right?

Well, not quite. Each of us is an individual in our neurological make-up, each of us has a unique selection of ANS issues as a result of our dysfunctional ANS, each of us reacts differently to each medication.

As with most medications, there are a whole host of possible side effects. It’s a well-known joke in chronically ill circles that the list of potential side effects for each medication also tends to be a list of the very things we are trying to resolve! 😉

My experience of trying an SSRI began as a desperate attempt to improve my functioning whilst awaiting my autonomic consultant appointment. After the first couple of days enduring hideous side effects it settled down and made a significant difference to my day-to-day quality of life.

I was hoping that the med might reduce the continuous near-syncope (near-fainting) and maybe even reduce the permanent severe nausea. The reality was so much more.

I experienced improved baselines in…

– near-syncope  (less severe)
– nausea (improved baseline)
– brain fog (improved baseline)
– some of the neuro-psych’ deficits (improved baseline for issues with word recall and spelling)
– constipation (improved baseline)
– heart palpitations and dysrhythmia (more stable, still irregular bouts)
– body temp’ extremes (more stable, fewer events)
– tingling and numbish sensation in face and arms (now only when near-syncope)
– fatigue (improved baseline)
– disrupted vision (fewer occurances per day of blurriness, tunnel vision, appearance of writhing, ‘dust motes’ of light)
– eye tremors (rarer)
– breaking fingernails (improvement)
– strawlike hair (improvement)

I have plenty more symptoms than just these, but these were the ones that improved baselines as a result of the SSRI. (For more info’ on autonomic issues see here).

SSRIs are also used for nerve pain, but I was not expecting any change in my pain. However, it became apparent over time that there was a significant change in the CRPS pains in my legs (the worst, and longest affected, areas in my body) – they were much easier to manage than before. That’s some bonus, huh?!

SSRIs are most commonly thought of as being for treating depression. If we have depression as well it is possible that our mood baseline can also be improved. I didn’t notice any change, but that’s not surprising as I have not been experiencing any depression (I tend towards the chirpy side! 😉 ).

There is no ‘magic bullet’. There is never a medication for this level of medical complexity that doesn’t have pros and cons. And over time I found that certain other symptoms got worse.

The one that has been causing mega problems is the issue with my jaw. I have had a clicky right side of my jaw for years, but it’s never been a problem. About 20% of the population have jaw issues like this that do not develop into anything more. My dentist checked my jaw every appointment and each time there was no change – everything was fine. But the SSRI changed that.

The first two days of side effects had included extreme effects on my facial muscles. It felt like my face was trying to pull itself downwards off my skull and, according to Magic Dude, that’s what I looked like too! Pretty extreme, but my doctor hadn’t started me off incrementally so my body had a big change to deal with. Initial side-effects are worth working through to see what benefits the medication really has, and if you start on a smaller dose and build up gradually the transition is much easier than my first experience was.

The extreme first side-effects calmed down but I continued to experience jaw clamping. It was very distracting as I continuously had to unclamp my jaw throughout all my waking hours. No sooner had I unclamped the muscles than I noticed they’d tensed up again. This was so continuous that it’s no wonder that my jaw pain worsened over time. I moved from clicky jaw status to having to physically (and very loudly) clonk my jaw into a different position just to be able to open my mouth enough to fit some food in, and I had to do this for each and every mouthful. Eventually the clonking, and even the clicking, stopped, but I couldn’t open my mouth very wide any more and the intensity of pain in my face was increasing day by day.

I knew that patients with autonomic dysfunction (dysautonomia) need to be aware of possibilities of things such as temporomandibular joint disorder (TMJ) which involves lock-jaw and jaw pain, but I’m not one to assume the worst. So I kept on going with the SSRI because without it my quality of life was frankly dreadful. I had no wish to return to the days of crawling along the floor just to get to the bathroom without passing out. But there came a time when the pain was so relentless that I decided it was time to go to the doctor and beg for a different SSRI with less side effects.

The doctor changed my SSRI as I requested and lo and behold…. I got even worse! The jaw clamping disappeared during the lower dosages transition phase and then came back with a vengeance. Permanent cluster migraine, woot! *sigh*

That alternate med was not the answer. It turns out that the fact that they were both SSRIs could be the problem, rather than the side effects of those ones in particular.

As my doctor had no ideas on the jaw pain, I contacted one of my awesome fellow patients who has oodles of nursing experience and has been piecing together neurological aspects of CRPS over the years. I asked her which SSRIs might be more likely to avoid this side effect. She found a research paper which linked jaw clenching issues and SSRIs. I then conducted a journal search on “bruxism, SSRI” (bruxism being the medical term for the jaw clamping) and came up with several more papers on that specific subject. Various psychotropic drugs including SSRIs have been found to have an effect on our motor responses. Tensing of muscles is not an uncommon issue, so research has found that jaw problems are pretty common in patients taking SSRIs. Papers have considered and discussed this over the years and last year one paper declared a “clear link” between the two. (References are included at the end of this post).

Research on bruxism and SSRIs

This new knowledge allowed me to make a connection that I had not made before – most of the symptoms that were worsening on the SSRI were motor issues:

– I developed jaw clamping, jaw pain, lock-jaw and soft tissue pain in the area
– restless legs at night had got worse, particularly the extra tension and resulting pain
– my occasional tremors were worse and more frequent
– dystonia in my legs became worse when it happened
– dystonia in my hands developed (I don’t even notice until I feel my fingernails digging into my palms)
– muscle twitches and spasms had become much more common

So suddenly I had a potential reason for these worsening issues. Next on the list… how do I address this problem?

One of the papers (the one that my friend had found originally) pointed out that SSRIs tend to suppress dopamine which has a knock-on effect on our motor control. Ah-haaaaa, now we’re getting somewhere!

So my fabulous friend started thinking along the lines of mixed SNRIs (Selective Norepinephrine Reuptake Inhibitor). As the name suggests – it works in a similar way to SSRIs, just on a different neurotransmitter chemical, norepinephrine (known as noradrenalin in the UK) and, to a lesser extent, it also has effects on the dopamine levels. A mixed SNRI works as both and SSRI and an SNRI.

So in theory a mixed SNRI could potentially solve my problem (I’m crossing my fingers here!) as it should enable me to retain the stabilisation of my ANS that the SSRI has been shown to achieve in my body, and the SNRI will (hopefully) counterbalance the negative effects on my motor control by reducing the SSRI’s suppression of the dopamine.

I could, of course, have considered taking an additional med as well as the original SSRI. But multiple pharma makes things complicated. Some meds have a tendency not to work well together, and even if they tick along together nicely we are no longer able to pin down what’s causing which symptom as easily as we used to because there would now be multiple variables in the mix. As a rule, less complicated pharma is the preferred option.

For extra info’:

I was originally taking 20mg of citalopram hydrochoride (Citalopram)
SSRI, Citalopram

I was then moved to 50mg of sertraline hydrochloride (Lustral / Zoloft) to see if the jaw clamping would stop. (50mg of Lustral is effectively matched to the 20mg of Citalopram).

SSRI, Lustral

Also known as Zoloft

I reduced the dose of the Lustral very quickly to 25mg to reduce the unbearable jaw clamping and resulting cluster migraine whilst not entirely losing the effect of the ANS stabiliser. It was far from ideal, but just to try and get me through until I could get a doctors appointment to share the intel I’d found and beg for a change!

There are only two SNRIs that get prescribed in the UK as per the Medicines and Healthcare products Regulatory Agency (MHRA). They are Venlafaxine (brand names Bonilux, Depefex, Foraven, Politid, Venlalic, Winfex, Efexor) and Duloxetine (brand names Cymbalta, Yentreve).

In the USA the Food and Drug Administration (FDA) approve both of the above SNRIs, plus a newer variation on Venlafaxine called Desvenlafaxine (Pristiq).

My doctor’s surgery tends to prescribe Venlafaxine as a first port of call so I went with that.

I checked with the pharmacist before paying for the meds and she confirmed it was a sensible response to the issues I’d been experiencing, and that it is also a pretty good one for less side effects. Phewee!

SNRI mixed, Venlafaxine

Also known as Effexor

So I now have a starting dose of 75mg of Venlafaxine (which is split over two doses during the day). My awesome friend advises that at the lower levels it is effectively only functioning as an SSRI (and research shows that jaw clamping is indeed disproportionately high in patients on this lower dose), and that the SNRI aspect kicks in at around 150-300mg. So I’m not expecting miracles on the starter dose.

This is now my fourth day of taking the low dose and, yep, motor control issues a-go-go! Some jaw clamping but mega-issues with dystonia constantly trying to onset in my legs. Sleeping is even less possible at the moment and it’s tough going. I was advised to call the doctors’ surgery to arrange the next dose increase and did so this morning. I should get info’ on how much extra to take and a new prescription soon. Then I will keep my fingers crossed for an improvement at the increased dosage when the SNRI should kick in and, hopefully, rebalance the dopamine levels.

On sharing this info’ with friends I found that quite a few people taking SSRIs for varying reasons had experienced jaw clamping as a side effect, and that they and their doctors were not necessarily aware of the link with the meds. So I felt that a post was warranted to share the finds with more fellow patients.

As always, I hope this helps. Much love from me, x

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References for the research paper I mentioned:

Ak, M., Gulson, M., Uzun, O. & Gumus, O.  (2009) ‘SSRI induced bruxism: case reports’, Bulletin of Psychopharmacology, Vol. 19, Suppl. 1, pp 114-116

Bostwick, J.M. & Saffee, M.S. (1999)  ‘Buspirone as an antidote to SSRI-induced bruxism in 4 cases’, Journal of Clinical Psychiatry, Vol. 60, Issue 12, pp 857-860

Fitzgerald, K. and Healy, D. (1995) ‘Dystonias and dyskenesias of the jaw associated with the use of SSRIs’, Human Pharmacology, Vol. 10, pp 215-219

Khalil, R.B. & Richa, S. (2012) ‘Psychotropic drugs induced bruxism: a focalisation’, Annales Medico-Psychologiques, Vol. 170, Issue 3, pp 169-173

Kuloglu, M., & Ekinci, O. (2009) ‘Bruxism in psychiatry’, New Symposium Journal, Vol. 47, Issue 4, pp 218-224

Lareb (Netherlands Pharmacovigilance Centre) (2007) ‘SSRIs and venlafaxine in association with bruxism’, http://www.lareb.nl/Signalen/kwb_2006_2_ssri