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

Uniqueness of our symptoms

Everyone with dysautonomia has their own unique collection of screw-ups in their body. We are all genetically unique, and in addition the effects of our own environment and experiences act upon us as well, ensuring a truly individual version of dys’ for each of us!

There are, however, recognisable overlaps or common denominators even when we have our own versions of them. Here’s my own personal list of oddness….

  • Near fainting, severe lightheadedness, like the world is spinning inside my head, can last days at a time. Hence being vertical really is a challenge these days, the horizontal is my friend!
  • Affected cognition, reduced awareness, severely reduced processing regarding understanding what people are saying, accessing words and just thinking generally. I’ve learnt the hard way that even if it’s simple I probably won’t get it!
  • Increased heart rate, tachycardia – like I’ve just been sprinting, but I’ve actually just put my shoes and coat on, or the conversation took a turn I didn’t quite follow. The slightest stress, mentally or physically, sets this off.
  • Tremors, in my hands. Which is embarrassing in Tai Chi class!
  • Tingling sensation, in my face, hands and arms; and my facial muscles feel like they’re both taut and saggy at the same time.
  • Breathlessness, because my body wrongly thinks it needs more oxygen.
  • Tight and uncomfortable in the centre of my chest, sometimes a needling pain sensation, too.
  • Reeeaaally severe nausea, can last weeks at a time.
  • Visual oddities, problems processing, sometimes the world is nearly in focus but only in a central circular area, more often I just can’t process it all so I get a general idea and my brain fills in all the gaps with whatever it feels like!
  • Feeling detached from my surroundings, y’know, spaced out, shot away, seriously not on the planet, maaan.
  • Light sensitivity, can’t process too much so flashing or moving lights, even reflected light, makes the near fainting worse, which made decorating the Xmas tree really tricky this year! I’m okay when I’m okay, and really not when I’m not!
  • Noise sensitivity, again I can’t process too much so I need one simple conversation at a time, if there is TV or music as well my brain falls over. Again, some times are better than others.
  • Hyperthermia, extreeeemely high body temperature. Every cell in my body feels like it’s most of the way to self-combustion, and I come close to passing out if I don’t catch it early enough. Tricky to work around as it’s not the done thing to rip all your clothes off while collapsing in a panting, unaware heap!
  • Lack of temperature regulation generally, I can never get warm, no matter how many layers or blankets I have. Only if I have an external heat source such as a hot water bottle or radiator etc. This was always the case up to a point, but has got really extreme since the Dys’ kicked in with a vengeance.
  • Arrhythmia, random events. I have had it for years since developing CRPS, still being investigated.
  • Tendency to go low blood sugar, a whole load of symptoms just go with this one! It needs to be picked up quick and sorted out or I’m just plain weird at everyone coz everything stops functioning properly. My best bet is to avoid any communication until I feel more ‘normal’ again.
  • Really clumsy, I’m the ultimate definitely-not-a-ninja. When the processing can’t handle stuff any more or I’m using up the only bits of available brain for thinking about something simple. Walking and thinking is no longer an easy task!

The main culprits for these are:

Hyperventilation syndrome, which has also meant that…

I’m in an almost permanent state of ‘fight or flight’, (it was all of the time, so this is actually an improvement!), this means that my body thinks it is in a terrifying life or death situation and it…

  • Shuts down ‘unnecessary’ brain activity (i.e. most of it)
  • Raises my heart rate
  • Injects loads of adrenaline into my system

So, effectively I haven’t got a clue what’s going on and the effects of the adrenaline on stress levels means that I find it really distressing. Especially if I’m trying to follow a conversation. This adrenaline thing has been going on for nearly two years (as I write this) and our bodies are only built to cope with this for 2-3 minutes at a time, otherwise it causes permanent damage. Our bodies are supposed to fluctuate the fight or flight thing on and off during long-term stress, of course my body didn’t get the memo on that, so it just switched it on and buggered off to do something else.

So my body now reacts to terrifying ‘life threatening’ situations, such as putting on my coat or cleaning my teeth, by overloading my body to such an extreme that I lose the plot and nearly pass out and/or throw up. Great protection mechanism, body!

The hyperthermia is it’s own separate thingy, as is the blood sugar, although all automatic processes are ultimately linked. The arrhythmia is still a mystery being investigated, obviously linked to the other near fainting/adrenaline stuff, but no-one knows how much. *sigh*

So, yeah, life is interesting. It’s easier when I can understand why things are happening, but I’m in a phase where the newer stuff isn’t quite all figured out, yet. Getting there, though, x