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).
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)
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).
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!
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
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
Brilliant. You turn this medical blether into something so real and coherent that it simply leaves me gaping with admiration. xo!
Aw thanks hon, I wouldn’t have got to this understanding half as quickly without your awesome input, thank-you, xx
Awesome clarity and great info!
Thanks hon, I really appreciate the feedback 🙂 xox
Hi Elle, I have been on Duloxetine for a few months now, starting on 30mg, now up to 60mg per day. It has calmed down my twitches in my spine but, I have more twitches now in my right leg & I also have restless leg syndrome at night & tensing. It has helped with the depression definitely & overall I wouldn’t like to be without it. I do believe that the 30mg worked better for me so when my Dr is back from ill health I will ask to go back on the lower dose. The other side effects I have had with Duloxetine are, excessive sweating at times & terrible bloating of the stomach, which can be really annoying. I have also put on over a stone in weight since taking Duloxetine, so I will now have to really watch my diet to keep this in check!
Thank you as always Elle for a great piece on yet more of the issues some of us RSD/CRPS sufferers have to live with. x
Hi Daren, I’m so pleased that you have found something that helps within your own body chemistry. 🙂 And yes, go with the dosage that works best for you. It’s frustrating that we have to find a middle road with the pros and cons but ohhhhh to find something that helps at all is such a relief, eh?!
Yes, I experienced bloating too, mine was terrible on Citalopram (I looked three months pregnant after being on it for about a year!) and much better on the Lustral. Various other little side effects which I could live with were okay, the main issues are in the post above. It’s such a balancing act!
Good luck with returning to the lower dose, and thank-you so much for commenting, it really helps me to know what kind of information my fellow patients find the most useful.
Bestest wishes and a big hug from me, x
Pingback: Primer on the Autonomic Nervous System: my take | www.MyZebraSoup.com
Pingback: Dysautonomia awareness month | Elle and the Auto Gnome
Very interesting! How did the SNRI work out for you? Better?
I’m not altogether sure yet Nils! The starter dose was not very helpful as I expected. I’m now on the 150mg per day (the minimum I talked about in the post above) but the near-syncope is the worst still, the ANS is not nearly as well stabilised as it was on the Citalopram, and I’m still getting jaw clamping (though not aaall of the time any more). I’m off to the doc’ tomorrow to discuss the next step. She may want me to try the next dosage, I’ll write an update when I know where we’re headed with this, x
That is too bad, it sounded quite promising. Looking forward to hear more! Have you seen / read evidence of CRPS actually being helped by SNRI? I have not yet tried it, and my worry is that it (or its side / withdrawal effects) it messes up the ANS and makes things worse. Nevertheless – I really do wish that it gives you some relief.
It could still be promising perhaps, and each med works differently in each of our bodies so what doesn’t work for one may work for another. I brain-fogged yesterday btw – the doc’s appointment wasn’t that soon, it’s gonna be tomorrow not today, doh! I must make up a list of things to mention as usual! 😉
Pingback: Autonomic stabilisation (attempt #3) | Elle and the Auto Gnome
Hi! I’ve been on Zoloft for about 6 years and dealing with the muscle tension/jaw clenching for the entire time. Over the last 4 years I’ve started getting migraines, which have peaked at a total of 6 in the past 12 months. I believe these migraines are a direct result of the muscle tension caused by Zoloft. I’m wondering if you had continued with success with the SNRI you were trying when you wrote this blog years ago. Thanks so much!
Hi Callie, yes I’m still on the same SNRI. I get the occasional clonky jaw on one side only but very rarely indeed so that is loads better.
There has been one change:
I decided to try a tiiiiny amount of the SSRI which was brilliant at improving my autonomic issues but which gave me a permanent mega-migraine. I wanted to test whether the benefits could be experienced to a useful extent at a dose low enough to dodge the migraines. Most of my symptoms remained the same level of stability that I get from the SNRI but one symptom which hadn’t improved much (gastric issues) was helped noticeably. I then wondered if I needed quite as much of the SNRI with that tiny bit of SSRI in the mix. I ended up halving the SNRI dose (which made my doctor go ‘wow’ which was kinda nice). So I now take 37.5mg of the SNRI (Venlafaxine) and 12.5mg of the SSRI (Sertraline). When I moved home early this year (which is why I’ve been MIA for so long) I had to change doctors to someone in my new area. She called me in to find out why on earth I was on such daftly low doses of what are more commonly thought of as being prescribed for depression and would be useless for that purpose, but once she found out it was for ANS stabilisation it all fell into place for her straight away.
I hope you’re doing okay and that you haven’t had to continue enduring the migraines and potential TMJ xx
Pingback: Trauma in a faulty nervous system | Elle and the Auto Gnome
Did the new med balance out and help??
It was excellent at stabilisation of my dysautonomia symptoms. Over time though it created muscle contraction issues (common in patients taking SSRIs) and the jaw-clamping was nearing the see-a-surgeon phase so I changed to an SNRI. The stabilisation is not as magical but the side effects were too extreme to carry on with the SSRI for me. Med’s don’t have the same impact on everyone of course so my experience is one example. But yes, both of them were life-changing xx
We must be so brave and willing to advocate for ourselves. How can a physician know the reality of personal need?
My physical situations are nothing compared to your reported concerns, though i nevertheless would like to unwind/rewind current circumstances. I search deeply too. Sometimes metaphysics can cut through the crap. Best to you. And thanks for sharing your search.