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Getting Oxygen From My Neurologist Is Hard

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Hey all,

I’ve been reading this forum for the past two years or so but this is my first post. Thank you everyone here for all the amazing help and information you provide. 

I’m British but I currently live in the Netherlands and have had CH for about 10 years now. In the past 2 years things have really ramped up, with attacks getting more frequent (every two months or so) and much more painful. I was using some busting techniques but have a history of addiction and have decided I can no longer walk that path. 

I’ve asked my neurologist if he can help prescribe oxygen for me, but he’s said that I can only have oxygen if I come into A&E during an attack. I have two young daughters I look after (4 months and 3 years old) and the thought of leaving the house at night in the middle of an attack with them to go and explain what’s happening at the hospital seems daunting and incredibly stressful. 

Is this normal? Or should I press to get oxygen at home? 

Thanks in advance for any comments and tips! 

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Hello Mr Watts,

So good that you have found this forum, too bad that you’re now part of the family. I live in the Netherlands too and there are a couple of things you can consider already. Get a prescription for verapamil as a preventive as long as you do not have O2. O2 is the safest and quickest abortive, but also get some Sumatriptan as an abortive if O2 is not working anymore or the attack is just too severe. If I were you I would change to another neurologist. Mine is Dr. Couturier of the Boerhaave Clinic in Amsterdam who is an expert in this field of CH in the Netherlands. He has helped me tremendously and will prescribe O2 immediately as well as the meds you are going to need.

All the best!

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Hey @Cast Iron

Wow - thank you for this information! I’m going to see if my Huisarts can refer me directly to Dr. Courtier and will take it from there. Much appreciated. 

Great to have connected with you - I’m in Amsterdam too but have yet to meet another cluster head. Hopefully that will happen one day in the not too distant future :D 

Will report back on any success - fingers crossed. 

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