Oh my goodness I am so incredibly relieved that I have at long last been given oxygen, and that it is working for me.
I'm so grateful to Vicky at OUCH for recommending I contact the National Migraine Centre for a consultation. They have free appointments for people who can't afford them.
Thanks to my consultation my GP was happy to prescribe oxygen and injectable sumatriptan this time, as advised. I was actually diagnosed 9 months ago but was told at the time that they wouldn't prescribe oxygen without a neurologist appointment (which I am still waiting for!)
But thanks to my NMC consultation report I had oxygen urgently delivered to my home, within 4 hours, as soon as I contacted my GP to tell them I am having another bout.
I haven't tried the injections yet. Can anyone tell me how they make you feel?
Relief at last - first time with oxygen
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Submitted by Dorothy on Wed, 28/02/2024 - 15:30
PermalinkThat's great to hear! I well
That's great to hear! I well remember the first time I got relief from oxygen, it's an amazing feeling. The injections work quite quickly and there's the option of 3mg injections available now as well.
All the best!
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Submitted by PETE_CHAMELEON on Fri, 08/03/2024 - 18:13
PermalinkOver the last 20 years I've
Over the last 20 years I've used sumatriptan nasal sprays 20mg and oxygen in combination and it works better for me than anything i've tried over many years. I don't like injections / needles so the nasal spray is my choice.
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Submitted by Lymestoney on Sat, 09/03/2024 - 01:20
In reply to Over the last 20 years I've by PETE_CHAMELEON
PermalinkIf it works for you that's
If it works for you that's great.
The nasal stuff tastes vile to me, and I'm happy to inject myself.
The needles are tiny, and the relief is so quick.
I've been splitting the doses because I was prescribed 6mg jabs and I don't want to use so much if I don't need it.
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Submitted by e_ trimmings@y… on Wed, 19/06/2024 - 17:56
PermalinkDo you find using the
Do you find using the injections and oxygen work or can I use just oxygen which was delivered yesterday
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Submitted by e_ trimmings@y… on Wed, 19/06/2024 - 18:08
PermalinkHow do you get your GP to
How do you get your GP to prescribe enough injections/ nasal spray to cover your attacks. I've had 30 consecutive nights with a cluster headache attack. First I was getting just one a night, now increased to two. He will not increase my prescription, even after I sent a letter from NMC. When I ask him to increase the prescription for my cluster headaches. His comment was" every body gets migraines",I said it's not a migraine, it's Cluster headaches, "well" he said " it's just a headache". What chance have we got!!
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Submitted by Lymestoney on Wed, 19/06/2024 - 22:11
In reply to Do you find using the by e_ trimmings@y…
PermalinkThe oxygen doesn't always
The oxygen doesn't always work unfortunately but the injections almost always do the trick
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Submitted by Lymestoney on Wed, 19/06/2024 - 22:14
In reply to How do you get your GP to by e_ trimmings@y…
PermalinkThat's terrible advice from
That's terrible advice from your doctor.
I would try for a second opinion from a different gp, and show them the NICE guidelines for treating cluster headaches which are available in this site.
I get enough injections to cover the max dose of 12mg per day during a cluster. They are so not just headaches!
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Submitted by Howard on Tue, 14/01/2025 - 18:50
PermalinkHas anybody been able to
Has anybody been able to source the high demand face mask. Its the Cluster 02 mask. I've seen is avalable in Europe and the US but not found anywhere in the UK.
Hope you can help.
Thank you.
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Submitted by Lymestoney on Tue, 14/01/2025 - 19:38
PermalinkYou can buy them from the
You can buy them from the cluster buster website as they do ship to the UK but the postage costs as much as the mask
you would be better off buying a demand valve
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Submitted by DavidH 7 on Sun, 02/02/2025 - 22:15
PermalinkThere's much to be said for
There's much to be said for working out ... what works for you.
After diagnosis, I was initially prescribed Sumatriptan tablets ... which seems ridiculous now but was an incredible relief at the time. I've had periods where I've thought Oxygen was amazing but started to wonder if the relief was temporary. Sumaptriptan injections seem the most useful thing to me though obviously that doesn't work if you're having more attacks each day than you're allowed injections.
e_trimmings - a consultant/expert should be able to direct your GP with more wisdom and compassion than you are receiving.