OUCH(UK) Organisation for the Understanding of Cluster Headache


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Help needed- new member

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#1 Tue, 31/01/2023 - 10:51
Last seen: 7 months 3 weeks ago
Joined: 31/01/2023 - 10:33

Help needed- new member

Hi all, 

Im a new member and have used the advice line a couple of times which has been super useful. 

The long and short of it is that I started having excruciating headache attacks in march last year however they were sporadic and I was getting maybe one a month, as time went on and into the end of August through to October they got more frequent (everyday/ every other day), from our research it seems to fit CH (apart from the fact I will get 1-2 a day but they can last up 30 mins - 2 hours, I am aware most people have more). I saw the neurologist who did not think they were CH as I have a long history (10+years) of migraine, however these are completely different to my migraine. I also have a nearly continuous pain on the right side of my head which doesn't improve with normal analgesics. 

I have had an oral and IM indomethacin test. The oral one on the highest dose of around 300mg a day I had 10 days without an attack but the continuous pain was still there. However neurologist stated this was negative for PH and advised an IM test which was negative. Following this she made a possible diagnosis of SUNCT/SUNA due to the way I described the pain. However when I researched this it doesn't seem to fit at all... My attacks are longer than a couple of minutes  (shortened by sumitriptan injections), and my main triggers are smells, light etc. I am currently taking the lamotrigine treatment just to say that I've tried it. 

Now my attacks are getting further apart unless I am triggered by something, and I was wondering whether it is episodic CH. The other thing is that my pain can different on different attacks, sometimes it is a stabbing pain that pulsates and eases to a mid level and returns, other attacks it is a constant piercing pain that doesnt go away. They are both excruciating. I wonder if anyone else has exprienced this and if it is in keeping with CH?

Also during aug-oct when I was having them most frequently I did not have a migraine (previously I was having them once a month for a week), however just this week I had a migraine attack, so I'm wondering if my year will just be cycles of some months of mirgiane and some months of CH?

My care has been transferred to a different neurologist but we are waiting on an appt. Prof goadsbys team was happy to see me, but unfortunately because we live in Scotland there is apparently a funding issue which the neurologist up here seemed rather strict about! 

Any help/advice or suggestions would be greatly appreciated!! 


Thu, 02/02/2023 - 10:43
Last seen: 4 days 12 hours ago
Joined: 26/02/2014 - 14:26

Hi Rose,

Give the Advice Line a call again as. We should be able to find a Headache Specialist nearer to you.  We cannot diagnose but it is important that you get a differential diagnosis to help you find a way forward.

take care


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