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GP insists he cannot treat me until I have seen a neurologist to confirm CH and recommend treatment

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#1 Fri, 15/06/2018 - 10:42
10JohnWG
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Last seen: 2 years 1 month ago
Joined: 10/06/2018 - 09:33

GP insists he cannot treat me until I have seen a neurologist to confirm CH and recommend treatment

Hi. Three years ago I had my first CH episode. So bad I went A&E who stated I had probably got CH’s. I was a bit ignorant at the time and struggled through until they went after about 6 weeks. They have just returned, and none in my GP practice has experience of CH’s or prescribing oxygen. They won’t proceed until I have seen a neurologist who they have referred me to. May take many weeks. He was happy to prescribe Imigran nasal spray which I don’t like the sound of re side effects and it is not recommended for over 65’s and I am 74.

Has anyone privately purchased oxygen?

Look forward to any advice.

John

Fri, 15/06/2018 - 17:28
Dorothy
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Joined: 19/02/2014 - 10:16

Hi John

Sorry to hear you are struggling with this. There are quite a few over 65s using the Imigran nasal spray and your GP must have thought it was ok to prescribe, he knows your medical history. Is the neurologist you are being referred to a headache specialist? If you give our helpline a ring and have a chat - they will go through all of this with you. It's always nice to talk to someone who knows what the pain is like.

All the best

Dorothy

Fri, 15/06/2018 - 21:50
sandramac
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Joined: 26/02/2014 - 14:26

Hi John,  have sent you a wee private message 

Sun, 17/06/2018 - 10:57 (Reply to #3)
10JohnWG
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Joined: 10/06/2018 - 09:33

Thanks Dorothy. I am now getting great helpline support. John

Mon, 18/06/2018 - 10:20 (Reply to #4)
Dorothy
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That's great, John.

All the best to you.

Dorothy

Thu, 28/06/2018 - 15:47
Ihpatterson
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Last seen: 9 months 9 hours ago
Joined: 27/05/2017 - 17:40

Late onset (over 65) is rare for CH. I too started at 70 and went to A&E who were useless as the attack was over by the time (4 hrs) I got to a dr. No diagnosis there but from google. GP said “I have heard about them but know nothing about them” ! Wanted to refer to local NHS hospital with wait for months to see whoever is available. So I looked up the details of private neuros. at my local private hospital with their specialities and interests. I chose one with appropriate interests and saw him privately in a couple of days for a half hour for £130, money well spent as he told GPS not to bother with nasal spray as they are useless with the runny nose you get with CH and told them that NICE recommended sumatriptan I’m injections and possible drugs to use if CH chronic as oppose to episodic. These I get on NHS from GP.

However late onset headaches can be a result of something more serious and needs a cranial MRI scan to rule out something worse. The private neuro suggested this to my GP who organised this very quickly at NHS cost at a local private diagnostic clinic. This proved negative luciliy.

Hope this is helpful.

Tue, 24/07/2018 - 12:01
Val
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Last seen: 2 weeks 2 days ago
Joined: 21/03/2012 - 15:16

Yes, we are aware of the risk of late onset severe headaches and would advise a sufferer to contact their GP urgently and we would hope would arrange fast MRI for the patient.  Sadly, we can't dictate what tests we have, we have to rely on the GP and the consultant.  Most NHS neuros who see headache patients order an MRI scan, part of the differential diagnosis process to rule out any other possible cause of the terrible pain. 

Pleased to read that yours was clear!

Did your neuro also advise/prescribe high flow oxygen?

Val. 

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