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Just Joined, Thought I Would Say Hello

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#1 Sat, 04/04/2015 - 19:48
NeilB001
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Last seen: 1 year 2 months ago
Joined: 02/04/2015 - 18:05

Just Joined, Thought I Would Say Hello

Hello,

Wanted to say Hi and get some advice on oxygen therepy im into a six week cycle of cluster headaches and things dont seem to be settling down, they usually last 4 to 6 weeks. Ive been on steroids that helped, but my doctor just gives me scrips for injections and tablets and sends me on my way. I managed to get an app to see my consultant he extentded the steroids for a futher two weeks that hasnt made any difference. Would i go back to the Doctors and mention the oxygen ??

Thanks Neil

Sun, 05/04/2015 - 08:59
Mr Git
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Last seen: 5 years 6 months ago
Joined: 26/02/2014 - 14:34

Hi Neil

Welcome aboard, just sorry you find yourself having to be here.

In the first instance I would call our Helpline. The number is 01646 651 979. Just leave your details and someone will get back to you. The Helpliners are all wonderful people and only too happy to help and provide support. They are all either sufferers or supporters of sufferers.

Sounds to me like we need to reverse back up to the start point. It is essential that you start with the right neuro consultant and that you get a correct diagnosis and treatment plan. I'd be surprised if that included throwing steroids at a 4 - 6 week bout. When my bouts lasted that long my treatment plan was Subcutaneous Sumatriptan Injection (up to 2 in 24 hrs) and high flow oxygen administered via a Demand Valve. This was occasionally supplemented with a GONB if I needed a break (this is a nerve block injection).

The problem with throwing endless other heavy duty drugs at this is that they can disrupt your cycle and have a detrimental impact in the longer term.

If you are anywhere near London, or near a train line to London, then Professor Peter Goadsby and Dr Juana Marin are based at King's in Denmark Hill, south London.

Best of luck with it Neil and make that call, you won't regret it.

Sean

 

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Sun, 05/04/2015 - 11:06 (Reply to #2)
NeilB001
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Last seen: 1 year 2 months ago
Joined: 02/04/2015 - 18:05

Hi Sean,

Thanks for your reply, will ring the helpline thanks, i live in Lancashire will try also to try to get another app with my consultant to see if he can help.

Neil

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