High Flow Oxygen for Cluster headache relief

For my wife

She has recently been diagnosed with this after over 5 years of symptoms, and is now chronic

We are having problems getting the high flow oxygen as recomended by all the groups,

Gp says " neurologist to organise "

Neurologist says " don't know you are the first patient I have dealt with that has this condition"

it is debilatating when the headaches occur, how can we speed this process up ?

Waiting 2 months so far

4 Replies

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  • Hello

    You need to start pushing, generally the specialist will arrange delivery of the stuff your wife needs, I do not know what is required. Sometimes you can get a referral to the occupational therapist, that may be a further way to go. You will sadly need to see your doctor again the both of you, as a carer.The doctor may be waiting for further information as you may need training with above.

    All the best

    BOB

  • Thanks for the reply Bob.

  • Getting a neurologist that knows more about your wife's condition might be a way to go? Different neurologist's specialise in different areas, some specifically focus on headache disorders. I see a great neuro, Dr.Silver in Liverpool who runs a migraine and severe headache clinic. You could ask the current neuro or GP if he could find someone who specialises or just knows more, about the Cluster headaches. Once you find someone who takes the interest, things should start rolling more smoothly. Good luck! Rachel

  • Your wife must see a neurologist that knows about the condition. It will save you both. Having suffered with the condition for 4 years, I now have a nerve stimulation for the pain every 3 months which has changed my life - the illness is horrendous I know.

    The doc tried all sorts of meds before we tried this and then the specialist did as well.

    All I can say is that your wife really needs the help of someone who knows what they are doing - its so difficult to deal with otherwise. Please push for a different neuro and make sure she is seen as a matter of urgency. I wish you all the luck in the world.

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