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SUNCT Syndrome

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#1 Wed, 17/03/2021 - 09:42
Last seen: 3 years 2 months ago
Joined: 12/02/2021 - 08:54

SUNCT Syndrome

Does anyone else in the group have SUNCT Syndrome? 

I checked three pages of topics and couldn't see a thread about it.  I was diagnosed in early 2019, following 6 months of the typical tearing/excruciating pain that only occurs around my right eye socket. It was at that time being triggered by eating (it go so bad i could only have a blended diet, and swallowing even triggered the episodes, lasting a few seconds to my worst attack of repeated clusters for an an hour and a half). Talking, laughing, and touching my forehead by accident also triggered them. I had been diagnosed Gabapentin to begin with and this didnt work, then Carbamezapine which was having a limited effect. I was also taking topirimate every day as it had been prescribed to stop migranes. 

The Neurologist prescribed Lamotrigine, apparently very success ful at stopping the clusters caused in SUNCT Syndrome - but it had an interaction with the Topirimate and ended up with me having to take several weeks to recover - all the time the pain esculating. Finally taking 1000mg of Carbamezapine today the pain came under control and i went into remission. 

Its come back 5 weeks ago but a very different bersion to what i had before as at night, when I fell into an exhausted sleep, i gained respite from the pain. On this occaision the pain comes at night and wakes me, i feel my face fizzing all day like a battery charging and them bouts of electricity fire out from the tip of my eyebrow consuming my forehead during bouts in the night. I'm now on 1400mg of Carbamezapine, and trying to cope with the sdie effects of that, but its totally weird - the pain is moving into the day time, i can still feel the ''pressure' in my eyesocket, gradually building up but with no pain becuase the medication is dulling my senses. Its not stopping it, just masking it. 

How long do these attacks last for? The last was a year due to a catalogue of distaser, so i'd hoped this might go sooner. I'm so scared about losing my job right now. I am 51 and female - dont know if that makes a difference? 


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