SUNCT / SUMA / Trigeminal Neuralgia

Does anyone else suffer from SUNCT or SUMA ?

I’ve struggled with this for a number of years but usually it only carries on for a couple of years. This time it’s going on since I had my TIA.

In my case, the SUNCT presents as follows. If you imagine you are tied in a corner facing a dozen police officers stood with their tazers primed, ready to shoot and they shoot me in my left eye.

The pain is unbelievable. And I have no control, it can be triggered by noise, movement, temperature…and TIA’s anything.

I’m terrified. I’m on strong medication to try to prevent it, but nothing really helps.

I’d love to talk to someone else who suffers from the same or similar


Shwmae @Sallybee, I have had this on occasion but was unaware it had an acronym. Usually around my eye area and feeling like someone has pinched jumpstart cables to my eye and clamped the other claws around a 12 volt battery. It’s rather infrequent with me, so I haven’t really looked into it, perhaps others here may be able to shed some more light on the matter.


It can be infrequent with me too or just once a day but at the moment the attacks are multiple a day and last for some time.

At night I wake, screaming with the dog lying on top of me, licking my face bless her.

Most of the time it’s just agony, and I wish I wasn’t alive but then feel guilty.


Had not heard of them so I looked them up… for anybody else who hasn’t heard…

Short-lasting Unilateral Neuralgiform headache attacks with cranial autonomic symptoms are rare headache disorders. As their names suggest, they involve short, intense bursts of pain on one side of the head, primarily around one eye. There are also involuntary symptoms like eyelid drooping, tearing, nasal stuffiness and facial sweating.

There’s a lot of info returned by Google. The that caught my eye

[Sunct](SUNCT Headache | National Institute of Neurological Disorders and Stroke

Suna -sic-


I have SUNCT. I can’t describe just how painful it is. I can only describe it as a whole police force setting their tazers off at once into my eye.

Normally I have a few very uncomfortable burst of it then things die down, but this time it was triggered by the TIA I had.

I’m exhausted, the attacks are more painful than ever before, I end up writhing in pain, I have NO quality of life. I’m not a good candidate for brain surgery, and have yet to find a cocktail of medication that works.

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By sympathies are with you - it sounds lawful there are many on here who seem to have paid pain that medical science can’t deal with.

I assume you’re familiar with it articles such as this

There’s a thread on central stroke pain that mentions The British Pain Society

Have you tried them?

Just see when you get past something that’s trivial the system of GPs who know a little about a lot of conditions but not much about anyone that requires digging into the process of getting good referrals can break down


this is similar to what i am feeling at the moment, Sallybee. it’s actually a good description, but happens about a minute or 2 after i shut my eyelid

do you still suffer from this??

Ciao, Roland