RxISK

Making Medicines Safer for All of Us

Visual, Balance and Erotic Sensory Shocks

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This video reflects a view many doctors have about Visual Snow and in particular a possible link to treatment.

Last week’s Can Antidepressants Cause Visual Snow Syndrome post hinted at what lies beneath the medical surface. The video came our way when Hannaa, one of the papers authors, mentioned VSS to one of her colleagues and was sent the video as his response to patients or anyone who raises VSS and possible links to treatment.

Jonathan Lochhead, another of the authors on the RxISK paper has also mentioned getting a similar response from the editor of a ophthalmology journal and has made it clear that he has found out the hard way how few journals seem to want to publish on the link between medicines and VSS or perhaps any hazard of treatment..

Many people who’ve developed VSS and got in touch with RxISK tell a similar story.  They have often begun to doubt their sanity and doubt it still more when told there is nothing wrong with their eyes and the problem must be ‘mental’.

Neurobabble like thalamo-cortical dysrhythmia may be mentioned but more often they are told they have a Functional Nervous Disorder (FND). This is a real disorder, they are told, by which is meant it’s real for you but in our mind it’s in your mind. If it was still acceptable to use the word hysteria that’s what you’d hear us tell you.

This slide shows you what you might end up facing if you report your visual snow or any SSRI linked visual problems to eye services.

Dismissing people like this may all be facilitated in the case of anyone who is on or has been on an SSRI – it brands them as having ‘functional issues’. Those who develop VSS are often bewildered and, even without this get-out-of-my-office help from their health services, figure they are going mad. While waiting on a psychotherapy referral and assessment for unresolved childhood trauma to materialise, an SSRI will be offered.

VSS, PSSD, PPPD and Akathisia

It must be clear from this that there is a clear overlap between VSS and Post SSRI Sexual Dysfunction (PSSD).

VSS interfaces with PSSD in many ways.

  • Both may start on treatment
  • Both may first appear on stopping treatment
  • Both can appear on treatment and continue on stopping.
  • Both can endure for months or years after stopping.
  • Many folk with PSSD also have VSS
  • Both conditions appear to happen in every country on earth, in both sexes, all ages and in all ethnic groups.
  • Those with either of these conditions risk dismissal by medical services, even though a late onset syndrome continuing after treatment stops – tardive dyskinesia – was first described in 1959. (Tardive refers to the slow or late onset of the problem).

VSS and PSSD likely also interface with Balance problems PPPD – Persisting Perceptual Postural Dizziness – See Balancing our Bodies and Our Selves and Juggling Our Bodies and Our Selves, which can:

  • Start on an SSRI
  • Start on stopping an SSRI
  • Start on treatment and continue on stopping
  • Endure for months or years after treatment stops
  • Many folk with VSS also have PPPD (dizziness).
  • Both conditions appear to happen in every country on earth, in both sexes and in all ages and all ethnic groups.
  • People with PPPD get told an SSRI will help, that they have FND and they are also referred to psychotherapy.

The tightrope walker here is an image from Paul Klee, who as Klee saw it:

‘the tightrope walker is emphatically concerned with his balance‘.

This is not just a matter of physical balance – it affects the balancing of ourselves. Disturbances to any of our senses – vision, hearing, touch, erotic touch and balance – strike at the heart of our selves, as these quotes from Bryn and Roy in a podcast about PSSD bring home.

Bryn:  Getting PSSD undermines your faith in the medical establishment and the whole system of science as we have it – the fact that none of these professionals understand this condition or know anything about it when we know we have it – its not some vague feeling.  Losing you libido is equivalent to going blind or deaf, its that level of sensory impairment

Roy:  The same can be said for losing your emotions – I felt I lost two senses – my sexuality and my emotions

Depending on the situation we’re in when hit by problems linked to our balance, vision or erotic senses, it can be expected that any normal person might start to have panic attacks. Panic attacks are very different to a generalized anxiety state, which is a state of constant but comparatively low grade anxiety. In contrast, it can be difficult to distinguish panic attacks from akathisia.

PPPD offers an interface with akathisia that VSS and PSSD don’t. While there can be brief spells of VSS and PSSD where the problem seems less bad and for some it can clear, for the most part VSS and PSSD are chronic conditions.

PPPD, however, can be episodic and both panic attacks and akathisia are notably episodic. In the case of akathisia while it can continue for weeks or months and perhaps only comes on after treatment stops – tardive akathisia – and lasts for years, it is not there the whole time. There are episodes that may happen 2 or 3 times per day, lasting 30 to 60 minutes, after which the person may end up seeming back to normal.

Treatment

In the case of PPPD, Vestibular Rehabilitation Therapy can help. VRT embodies some of the principles of Interoceptive Exposure Therapy which may be why it helps – see Interoception or Neuroplasticity.

There do not seem to be openings to develop similar approaches for VSS or PSSD.

A 2004 Paper from ‘Eye’ by Clare Fraser from Sydney covers some of the theories behind VSS and the treatment options.

The common factor covering PPPD, VSS, PSSD and Akathisia is that they are bodily not mental states. These problems are linked to our sensory nervous systems, which is where SSRI drugs act. They are not brain based problems – despite the Brain Fog experiences people have in all these states.

These issues will be picked up in DH and RxISK posts over the next two weeks – The Science of Interoception and In Praise of SSRIs.

Research

In the meantime, the VSS paper has been downloaded several hundred times, and is ranking very highly on Google search.

At the heart of PSSD is a very obvious genital numbness that comes on within minutes of a first pill – but it also wears off and disappears completely for over 50% of people when treatment stops.  It happens in maybe 95% of folk, about the same number whose hearts slow in beta-blockers.  But just as the heart rates of some of us speed up on a beta-blocker, so also some folk do not get genitally numb on an SSRI.

If you are one of these folk, can you check if lidocaine/lignocaine ointment makes you genitally numb. Lidocaine numbs about 95% of us, but dentists know roughly 5% don’t get numb gums from it – they have a gene that codes for a variation in sodium channels that means it doesn’t numb.  does this also apply to genitals – we don’t know.

Can people who do not become genitally numb on an SSRI get PSSD? If they can what does their PSSD look like? Most people get chest tuberculosis but some get gut tuberculosis. They are both TB but look very different.

Is there a VSS, PSSD and PPPD equivalent to the tuberculosis gene?

One candidate has to PIEZO2 or PIEZO1 proteins. These proteins are stretch sensors.

People with a PIEZO2 gene variation present with a PSSD-like  Erotic-Sexual profile along with Balance and Vision problems.  See Lam et al.

Here are some names and emails for folk researching PIEZO proteins. Great if some of you could contact them – in any email you can draw their attention to the RxISK Prize.

They don’t have to cure VSS, PSSD or PPPD to get the Prize – a substantial contribution like a genetic test to identify those at risk or to confirm PIEZOs are involved in these conditions so those of us affected can show our doctors and ask innocently whether FND has a gene test like this would be a candidate to win the Prize.

Of course the real incentive should and may well be the Nobel Prize that someone will get for solving these issues.

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