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Advice needed - CH or SUNCT / SUNA

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#1 Thu, 28/06/2018 - 13:10
JonathanT 2
Last seen: 2 years 6 months ago
Joined: 26/02/2014 - 14:55

Advice needed - CH or SUNCT / SUNA

So, after going to my GP to get another prescription for my Imigran injections he has refered me to a Neuro.

Remarkably I somehow got an appointment 1 week later and today I had my appointment.

The guy seemed very knowledgable and helpful but I have come away slightly confused now.

My History:

I was diagnosed a number of years ago by a GP at my local sugery with ECH (her husband has CH so she was in a fairly good position to diagnose me). She (and my GP) prescribed me the Imigran and sorted out my oxygen supply. They also prescribed me Verapamil tablets, but these seemed to be ineffective.

I have been using the oxygen and Imigran quite successfully for a number of years now.

My symptoms start as a block right nostril, followed by slighty pain in my right eye and a sensation of grit in my eye which then progresses to a kind of stabbing pulsing pain in my eye of higher intensity which then starts to spread across the side of my and up my head and down my neck. I then get tearing in my right eye as the pain gets worse. Before i was diagnosed with CH's I had to grin and bear it and usually resulted in my getting very angry at anyone around me trying to help me and crying because of the pain.

This usually happens in the spring and the autumn every year like clockwork. I generally get them first thing in the morning with one or two during the day and then one at night just as ive managed to get to sleep, usually I start the cycle with the odd one, gradually get more and more then they suddenly stop. The year before last I was getting that many that my GP prescribed me prednisilone to try and break the cycle - which it did. Then last year I seemed to skip a year completely which was odd, but I wasnt complaining and probably had one of the best spring/summer/autumns since getting the headaches.

This year however I started off very abruptly in the middle of the night, followed by repeated attacks. I have probably had around 7 or 8 a day for the last 6 weeks. I have been taking Imigran injections for these which I am aware is well over the licensed dose but my GP has said that its not ideal but as long a I am aware of the side effects and I stop/contact them if I start to get any issues it should be ok. This year I have found the oxygen to be ineffective in the fight. It works, but only for the time I am on the oxygen. If i use it whilst I am getting a headache it stops the headache but as soon as I stop it comes back. I then thought maybe I wasnt staying on it long enough after the headache stopped so have gradually experimented with staying on it for longer and longer to see. It seems that no matter how long I stay on it for the headache will come back within 5minutes of stopping taking the oxygen.

On week 4 of having 7-8 a day I went back to my GP and asked for a course of steroids again in the hope it would work.. For the time I was on the steroids I was 100% clear, but as soon as the dose tapered down to 2 tablets they came back as if I hadnt taken the steroids at all. I have been back again to the GP for another prescription of Imigran and it was a different GP and he was the one who got me the Neuro appointment.

The Neuro I spoke to today asked me all the usual questions, runny eye, tearing, pain in the eye, length of attack etc and he has come to the conclusion that I dont have ECH but have episodic SUNCT/SUNA. He has prescribed me Lamotrigene tablets, 25mg a day for 1 week, then 50mg a day for the following weeks. He has said that this proves effective with SUNCT/SUNA and I will have to take them continuously for ever.

What has left me somewhat confused is that symptoms of CH/SUNCT seem very similar but the triggers and treatments are very different. The triggers for SUNCT (touching the face, moving the head, certain body movements etc) dont seem to apply to me. I also read that Imigran has virtually no effect on SUNCT yet Imigran seems to be the only thing that aborts my headaches.

I have also noticed with my headaches that if I am working hard in the garden/excercising I can completely stop the headaches but the second I stop for a cuppa/food/break I will get a headache within a few minutes.

The triggers ive noticed for my headaches are: alcohol: this is virtually instant, sunlight on my face: this seems to take a few minutes and i can feel it coming on slowly, if I have a cold / hayfever: again I can feel it coming on, going to sleep: usually with 20-30mins, needing the toilet seems to set me off too!!

The odd thing however is that I read that with SUNCT certain neck positions can abort a headache - I have found thart if I sit with my neck effectivly crinked downwards (which would normally give any normal person a headache) it will 'pause' my headache - as soon as I move from that position its as if someone has just stabbed me in the head with a screwdriver.

And even stranger was that whilst at the Neuro he was showing my father and I were the nerve that causes SUNCT was and he lightly poked the back of my neck and I almost hit the roof with the pain and within 5mins I had an 'unscheduled' headache, I then took an injection which took the headache off and I can now touch the back of my neck and there is no pain at all...

I really appreciate the time the Neuro spent with me and obviously I want to try the new tablets and hope that stops the headaches as Im beginning to suffer from my abrupted sleep patterns, but I'm just concerned that technically I should be at the end of my cycle soon and I am worried that taking the new tablets will sync with the end of my cycle and we will think they have worked when ive just stopped getting headaches, especially with the side effects of the tablets and needing to take them all the time.. The Neuro has also booked me in for a nerve block injection in 4 weeks time based on the SUNCT diagnosis.

The Neuro was Dr Vinod Metta and from a google he seems to be quite knowledgable etc about a lot of stuff so I do trust his diagnosis but after going through a number of years of misdiagnosis by other Neuros and doctors im just cautious...

Any thoughts and advice on this would be greatly appreciated.

Mon, 09/07/2018 - 22:25
JonathanT 2
Last seen: 2 years 6 months ago
Joined: 26/02/2014 - 14:55

Any ideas anyone?

Tue, 10/07/2018 - 11:37
Dorothy's picture
Last seen: 8 hours 55 min ago
Joined: 19/02/2014 - 10:16

Hi Jonathan,

I think the best thing for you to do would be to ring the helpline to have a chat and go through it all with one of our advisors. It's always good to talk to someone who understands. Just leave your name and number and they'll ring you back free of charge.

All the best


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