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Treatments for CCH

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#1 Sun, 29/06/2014 - 12:50
SarahC
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Joined: 26/02/2014 - 14:55

Treatments for CCH

I have been a CH sufferer for 5 years, chronic for the past 4. I have tried many preventative drugs, some of which had horrible side effects. I was referred to Queens Square for discussions re ONSI. This I have been informed is no longer funded at present. I have 3 headches in 24 hours and use Imigran injections, sumatriptan nasal sprays and high flow o2. Are there any members who have exhausted all avenues re medication or who don't wish to try anymore at present and just have to live with their headaches?

Sun, 29/06/2014 - 17:17
Mike
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Joined: 21/03/2012 - 12:43

Sarah, ONS is still being funded at St Thomas's in London, ask for a referral there to Dr Giorgio Lambru, he is excellent. Also you haven't mentioned demand valve ultra high flow O2, high flow O2 or Gammacore and other treatments which will be presented at the St Thomas's meeting in October. I do however empathise with your  comment about just trying to get on with your life and some sufferers do, it is very hard though.

 
 
 
Chairman OUCH UK

Mon, 30/06/2014 - 13:28 (Reply to #2)
SarahC
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A consultant at Quuens square told me that there is no funding for ONS so no one can perform it on the nhs until the government recognise it as helpful to sufferers. I use high flow o2 with a non rebreathe mask. I have never heard of ultra high flow or demand valves.

Tue, 01/07/2014 - 10:00 (Reply to #3)
Colin Allen
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Funding for ONSI has been withdrawn from most centres. As Mike suggested,you should seek a referral to St Thomas' - you might be pleasantly surprised.

Mon, 07/07/2014 - 17:40
Mike
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Colin said:

"As Mike suggested,you should seek a referral to St Thomas' - you might be pleasantly surprised".

Absoulutely:) Not all hospitals have the same available treatments.

High flow uses up to 15 lpm and ultrahighflow uses uup to 200 lpm using a demand valve. 200 lpm is theoretical as most peole cant inhale it more than 40lpm. high flow takes up to 20 minutes to work, ultrahighflow takes about five minutes to work.

 

Mike

Chairman OUCH

 
 
 
Chairman OUCH UK

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