Does anyone have experience of deep brain stimulation used for SUNCT?

[Sandra27]

My father has been suffering from Sunct for the past 12 years. This has been mainly controlled by Lamotrigene and Indomethacin (please excuse spellings). He had an ONS fitted 3 years ago which also seems to have helped...............up until 1 month ago, he has been admitted to UCLH (previously he was under Proff Goadsby and now Dr Matharu) as an emergency admission. I have never seen attacks as bad as the ones he is getting (he is 80 years old), since admission he has been on IV Lidocaine but this does not appear to be touching them. They have tried him on Duloxetine but this was causing concerning results on his ECG so it was stopped. He has had Botox 2 weeks ago but again this does not appear to have worked. Dr Matharu has just been to see him to say that they are running out of things to try but has mentioned DBS, do you have any experience of this?

[Pvancourt]

I'm not sure what SUNCT is, but I just feel so bad for your Father. I know how difficult and frustrating it can be to watch your Dad in so much pain. Hang in there....I hope they find something soon to help him.

Paula

[Sandra27]

Hi Paula, thank you................I have copied and pasted the wikipedia definition of SUNCT which does describe this monster of a condition pretty well; Short-lasting Unilateral Neuralgiform headache with Conjunctival injection and Tearing, or SUNCT, is a rare type of primary headache that belongs to the group of headaches called trigeminal autonomic cephalalgia (TACs). TACs are caused by activation of the autonomic nervous system of the trigeminal nerve in the face. Patients experience excruciating burning, stabbing, or electrical, headache mainly in the orbital area only on one side of the body along with cranial autonomic signs that are unique to SUNCT. Each attack can last from five seconds to six minutes and may occur up to 200 times daily. Onset of the symptoms usually come later in life, at an average age of about 50. Although the majority of patients are males above age 50, it is not uncommon to find SUNCT present among other age groups, including children and infants.

Thank you again x

[elliott]

Hi I've had SUNCT for 20+yrs I had a DBS put in 18 months it helped my SUNCT attacks by 40% as far as the attacks and 50% for the pain . Better then drugs any day . The only thing was I got a infection in the wound and in the end we have had to take it out but hope to have it put back in as soon as infection has cleared up . Hope this has helped . X

[Sandra27 in reply to elliott]

Thanks for that Elliott, just heard today that the Botox seems to be working after 2 weeks but now they are talking about Ketamine Infusion, after taking him off the Lidocaine. I think they are going to do the DBS as a last resort because of his age. I will let you know how he gets on if that's ok? Thank you x

[elliott in reply to Sandra27]

Please do . If you need to ask anything or just want to talk please contact me .

I've had Botox and it works fantastic for my chronic daily migraine and will be having it again as soon as the infection sorted out . . Hope he keeps improving it is a evil illness to have I'm back up to 90+ attacks a day again and it's no joke . Yet you must keep going and still try and keep in control x. X x x

[juliep77 in reply to elliott]

Hi how many times have u had Botox for ur mirgrages

[labix in reply to elliott]

What treatments have worked for you SUNCT

[Sandra27]

Will do Elliott, thank you I really appreciate that, when I try to describe Dads condition to people and use the word headache they just don't get it, as I am sure you have had experience of. Its so hard to see him (he's never been a weak man) clutching his head crying and moaning on a hospital bed with the staff looking on as helpless as us the family. Are you in the UK? Who treats you? xx

[labix]

My husband has refractory SUNCT, and we have tried just about everything. Please let me know any treatments that have worked.

[River2014 in reply to labix]

Hello,

My dad has this. I think he had it a year ago for a month and it has returned. This is a self- diagnosis. How is your husband doing? Does he have them every day all day? Do the headaches ever go away. Any info would be great. Thanks!