OUCH(UK) Organisation for the Understanding of Cluster Headache


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Hello, if this is a question that has been asked for please excuse me!

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#1 Tue, 22/07/2014 - 12:49
Last seen: 8 years 2 months ago
Joined: 22/07/2014 - 10:33

Hello, if this is a question that has been asked for please excuse me!

I have just joined and have to say as a parent of a teenage daughter suffering with both a status migraine (continuous since May 1) and what seems like the past three nights at precisesly 6pm, a new problem of cluster headaches you are a wonderful source of information for which I am hugely thankful.

My daughter is currently in a London hospital having been brought here on Saturday night when the first attack happened. The first lasted 80 mins and stopped in 60 seconds, the second (Sunday) started ten mins earleir and lasted 75 mins. Last night the attack started at the same time and they quickly gave her high flow oxygen and it stopped within 7 minutes - a huge relief!

Becasue this ward has Consultant Peadiatricians and there is no Peadiatric Nurologist in this hospital they have a tiny knowledge of Clusters and seem to be implying that they might discharge her - they are trying to contact her Neuro at GOSH but I am concerned that they might discharge her anyway - obviously no oxygen at home, I have downloaded the forms to give to my GP (is this correct, and also to request portable from a Neurologist) and am at the ready.

She was discharged from GOSH on Friday after a four day infusion of DHE for the Status Migraine and this new symptom developed on the next day and as yet it has not been established if this could be a side effect from the DHE.

However, has anybody any guidance as to how long it will take to get oxygen to us at home and any tips as to how to hurry this process up?

As you can imagine I am trying to avoid the problem of being at home and letting her go through the distress of another attack during which she runs on the spot hitting at her legs in distress, screws up her eyes during and has runny eyes after and no memory of what has happened bar the pain. It starts and stopps within 30 seconds.

Obviously we need a firm diagnosis but bitter experience has shown me that trying to get all the hospitals who are involved with her care going in the same direction takes time.

I'd be greatful for any advice, with thanks.



Tue, 22/07/2014 - 16:38
Last seen: 2 hours 16 min ago
Joined: 26/02/2014 - 14:26


So sorry to hear your daughter having such a rough time. please phone he Helpline 01646 651979 and leave a message and someone will get back to you.

take care


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