New Poster, first attack in two years.

[BeepSmile]

Hey all, so I had episodic cluster attacks from about 2017 and got diagnosed with CH in 2019, prescribed sumatriptan tablets 50mg/spray 20mg and those were handling it - my attacks were 3 hours long so even the tablets were a significant improvement, either fully supressing the attack or reducing it all the way to a mere 'very sore'. 

Then COVID happened and lockdown really exacerbated my depression, and since the sumatriptan was working I never followed up on the verapamil the neurologist wanted me to start trying - I declined when they called for me to come in [they called a long time after my last bout, so the fear had receded a lot since then. Also, depression].

Anyway, two? three? more years of 10-14 long bouts of attacks, 'handled' by sumatriptan, though of course I was exhausted/debilitated for the duration, but then I just... didn't have an attack that August. Or the following March and so on. Freedom. Bliss. [Tinged with terror].

Until about 10 days ago.

 

So I took sumatriptan tablets, but for the past three or four days they haven't had an impact at all - at the 25-35 minute mark, where the attack usually starts to quickly taper off to nothing, instead they continue for about an hour and a half, though I will say that this bout's attacks are less terrible than previous bouts have been.

Then at 10pm last night I got a strangely slow starting one, took a tablet and it either did nothing or had a tiny effect as the pain was about 70 percent ish what my typical attack is - though such is hard to measure - and had another attack today at 10 am. Which is an increase in frequency.

I took a tablet and it did nothing to help, and an hour and forty minutes after the attack began, rather than ending, it just lessened a bit in intensity.

 

Since then, I read up a bit on what people try, my flatmate has brought me some redbull, and I downed one, which may be helping. The pain is in the same place in my head, and I still have the puffy/tearing eye and runny nose and neck soreness, but the intensity is no more than an incredibly bad headache.

I've not been able to read the guides on this website on what people have tried in depth, though I am going to when this attack ends, but I was wondering if anyone could point me to some posts/threads that discuss the following, please:

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[Kinda doxxing myself here, but only a little: I'm down in Galway intermittently for the next few months as I was planning of leaving the UK [Northern Ireland], though that plan will need to be reexamined depending on what CH health services/costs are in each country]


1. Does the above [much longer, much weaker cluster headache-shaped pain] that I'm experiencing right now sound like a rebound attack from the sumatriptan or something else?
2.Have there been posts/threads that someone can link me to that go into detail about getting Oxygen either via the UK's NHS or how to get it through Irish health services, and that point to information about the costs of such? 
3. Are there like, any support groups around in Galway or Belfast for people with Cluster Headaches. I didn't look terribly hard, but I didn't see any in Galway at least.

Edited November 24, 2023 by BeepSmile
improving word choice/clarity

[CHfather]

Regarding 2 and 3, it's been my understanding that OUCH-UK is very helpful in all regards. https://ouchuk.org/.   It's also my understanding that ClusterBusters board member Ainslie Course is a very helpful person. She is based in Glasgow and organized a European ClusterBusters conference this year and also will be hosting one next year.  I see in one post that she can be reached at ainslie@clusterbusters.org.   

[Shaun brearley]

I've got to by fair,  my old neuro prescribe my o2 , be he understood CH, and wanted to learn more , but bless him , he has retired . Take the information @CHfatherhas posted , to your neuro