Hello all,

I was recommended this forum by someone I have been speaking to online recently, his name here is 'BigMatt' I think.

I have been diagnosed with SUNCT as of a few months ago which is I believe in the same family of disorders as CH. Currently on 300mg Pregabalin and 100mg Lamotrigine (working my way up to 200) per day which is providing some kind of relief but nowhere near enough.

It started off as a general dull aching, burning pain just below the eyes early last year which got worse and worse until they finally realised it was of a neuropathic nature. Was on gabapentin and worked up to a pretty high dose which controlled it to an extent.

But then as of last December it started getting A LOT worse, with excruciating stabs of pain going right up behind the eye (mainly on the left side), lasting a few seconds each, which come in cycles of many in a row for up to 20-30 minutes. Then sometimes it comes on as a severe burning pain which stays constant for hours, interspersed with stabs as well.
When the stabbing pain comes on I actually feel a huge sense of pressure behind the eye too and my face often jerks quite violently with each one.

I was just on a train home and it was literally a case of staring at a point on the wall for a solid hour trying my best not to scream and throw something against the wall. With the face vibrating and going mad the whole time, manic thoughts and general inability to think coherently.

It is absolutely destroying me and I am getting very desperate. Very dark thoughts at times as in I would rather not live like this. The meds used to work, but not so much these days. Either I am becoming tolerant to them or the underlying pain is getting worse. I think it is a bit of both, but more the latter.

It has got exponentially worse ever since it started and I am really concerned where it will end up. I currently work full time in a promising career and I am scared that I will have to give up working which will erode the final shred of sanity that I have remaining.

So, I have great sympathy for all the CH sufferers here since I have read that this is basically like the stabs I have but constant for a longer period of time.

Has anyone here had any experience of SUNCT and if so what worked? How long does it last? (I have been told it will 'come and go' but have yet to experience the 'go' part!) Has anyone else had the condition appear in a progressive form like I have?

Thanks in advance for any replies or assistance in this.

I did read an artical on Sunct, and Tizanidine was helping
sufferers stay pain free. Talk to your Doc and see what
he/she thinks.

Hoppy.