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Adapting to clusterhead life

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#1 Fri, 26/02/2021 - 07:00
Last seen: 2 months 2 weeks ago
Joined: 26/02/2021 - 06:08

Adapting to clusterhead life

Hi friends,


finally been compelled to join in here..

27 year old male here. As far as I can remember, my first episode happened in November of 2015, then again in 2017, then again in 2019, and it wasn't until the latter that I managed to work out what I had, battled with my GP for Zomig nasal sprays (which work better the earlier I administer) then my best friend took the initiative and helped get me an appointment with a private neurologist. Turned out to be well worth the money considering I practically had diagnosed myself by this point and all he had to do was confirm it. The episode ended the same day I met him, but he did inform me of the ins and outs of treatment, and passed my case over to a neuro through the NHS, who has rang me a couple of times since.

I started my latest episode around a week ago, seemingly 8 months early if we go by the bi-yearly schedule, and they have been ramping up everyday. I've been waiting for the doctor to ring me back for a few days now as I'm eager to try some preventative treatments whilst I'm in an episode. I can manage things somewhat with the Zolmitriptan nasal spray. I'm an actor, and I have to say I've been lucky that my episodes so far haven't clashed with work but I worry for the day they might, because my industry is not the kind of industry that would be very forgiving to a condition which is a "headache". I therefore I do think it's probably quite important that I try Verapamil.. I'm also concerned about the jump in my episode schedule but it seems through reading here, that's not too far out of the ordinary. My dream right now would be to get oxygen, so I can minimise my pain, but with the current world situation that might not be easy..


sorry for the long read - it's comforting knowing there's a small collection of sufferers and supporters here so I wanted to lightly introduce myself into that group. 

Luke xx

Fri, 26/02/2021 - 16:52
John4703's picture
Last seen: 2 years 7 months ago
Joined: 14/12/2020 - 20:31

I noticed your "as far as I know".  I started getting cluster headaches last year and I've been keeping a record of every headache, every time I've spoken to a doctor, every day that I've felt ill.  I think having an accurate record will help the doctors dealing with me.
It is easy to forget details so I am determined that they know everything.



Sat, 27/02/2021 - 22:41
DavidH 7
Last seen: 2 weeks 4 hours ago
Joined: 26/02/2014 - 15:13


Although my last three episodes have all started in January on alternate years, prior to that (over 25 or so years) they didn't seem quite so fixed ... so I'd encourage you not to be too perturbed by early/late episodes.

I've wondered on here whether accessing oxygen would be an issue "in these times" but it was completely straight-forward [in January] and I had two cylinders within 48 hours.   It might also be worth exploring injections rather than the nasal spray.

Good luck. 


Tue, 02/03/2021 - 07:39
Dorothy Trustee
Dorothy Trustee's picture
Last seen: 1 week 3 hours ago
Joined: 19/02/2014 - 10:16

Hi Luke

Sorry you had to join the CH gang. You'll be able to get 02 through your GP. If you print out HOOF (Home Oxygen Order Form) and the form for a demand valve, see our downloads section https://ouchuk.org/downloads it should be pretty straightforward.

Any problems, give our Advice Line a ring.

Dorothy Chapman

Dorothy (Trustee)

Mon, 08/03/2021 - 22:34
Last seen: 2 months 2 weeks ago
Joined: 26/02/2021 - 06:08

I just want to thank you all for the replies. This episode has been strange in that it has had headaches of inconsistent timing and intensity.

Dorothy, thanks to your post I printed out the order form and took it to my GP last week along with my neurologist diagnosis letter, and today, to my surprise and relief, I was delivered some home oxygen. I do believe this episode is dwindling out now (I'm lucky that I've only ever had to endure short episodes thus far), so I may not be able to test my response to the oxygen until my next episode, which if it continues on with my regular cycle, will be in the upcoming November. That being said, the fact my GP actually listened to me and followed through with his word on trying to get me the oxygen has made me feel so thankful that someone has finally recognised my condition. David, you were right, it wasn't difficult at all.


TL;DR; I've been delivered oxygen towards the end of this episode, so I may not be able to try it out until my next episode, but I'm so grateful I have it going forward.

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