Dear all,

Sorry for English, my Dutch is not good enough. I live in Den Haag, and study at TU Delft. I have cluster headache for 6 years now, and before I came here I treated it with oxygen. I would like to inquire how I can get oxygen here in The Netherlands. I have already sent an e-mail to my doctor, but still no answer (probably due to the holidays).

So I would like to know the way to get oxygen with regulator. I have re-breathing mask.

Thanks for your help in advance!

Hi Kefehu,

If everything's correct, your MD should have contacted you by now and gave you an prescription?
To order your oxygen, check vivisol.nl. I get my Oxygen from them. It's a large company that delivers.

Kind regards,

ps. In a way "nice" to know that I'm not the only Clusterhead here in the Hague ;)

Hello Don Corleone,

Thanks for your kind help. I have visited my huisarts, and asked for oxigen and sleeping pills. He told me that it was not normal to have oxygen at home in The Netherlands, so I did not get it. It's a pity, because that works for sure, and I even have a rebreather mask. I also did not get any pills, except the one I was afraid of: Prednisolon. It has strong side-effects, and the only benefit of it was that I had 2 days without pain. I had to take it for 1 week, I stopped it yesterday. In the past few days I had attacks of extremely painful 6-7 hours instead of the 20-30 min, which normal was in the past.

I am also happy to hear that I am not the only one in The Hague with cluster. Here is my mobile number, give me a call, or just send an sms if you want, it would be nice to discuss with you about oxygen or any other treatments (0629346877). I also have 'whatsapp' and 'Viber' on my phone.

Hi kefehu,

It's actually quit strange that your MD didn't gave you Oxygen. A lot of CH patients have it at home. There are even people who have a smaller container for 'on the road'.
I.m.h o. Your MD's argument for not prescribing oxygen isn't valid.

Only thing that's important when having oxygen, is to inform your local firebrigade. You'll receive a letter of notification and a O2 sticker that you have to place at your frontdoor.

I would advice you to let your huisarts give you a follow up appointment with a neuraligist.

We'll keep in touch!

Don

Hello Don,

Yes, it's strange that my doctor didn't let me have oxygen at home. But it seems I have found a solution.

There are companies that make small oxygen canisters, which can be purchased easily. I have just found the Go X Power Oxyigen boost product, which can be purchased in the Vitaminstore in Den Haag. I am going to buy some canisters after work today:
http://vitaminstore1.com/vitaminen/1497 ... ns-energy/
Anyone has experience with these types of oxygen?
I hope it can blow away the pain!

Kefehu,

You're not even the only cluster headache patient at TU Delft! I have CPH, a similar condition mostly found in woman, and I know another former CH-patient in my faculty.

Please ask your doctor to be referred to a neurologist. Oxygen is the least harmful and cheapest option and for many neurologists the first choice for CH treatment. Your General Practitioner is not the person to treat Cluster Headache (I assume you were diagnosed as a CH-patient?).
The loose oxygen tanks might not offer pure oxygen, and do therefore not help with CH I have been told.

Take care,
Splinter

Dear Splinter,

Thank you very much for your reply. It's good to know that I am not the only one at TU Delft with CH.

I went yesterday to the Vitaminstore in Den Haag, but they didn't had in stock the oxygen canisters. So I have ordered it online, I should receive a 6-pack tomorrow.

Furthermore, I have asked around at TU Delft, and I got a bottle of oxygen for use.

I was diagnosed many years ago with CH back in my home country. Fortunately, I could solve the problem in my way, and I don't need to spend lots of money on a specialist here as well.

Dear all,

I have bought the above mentioned canisters, and actually they helped me. I needed to use 2 bottles for a strong attack, but the oxygen blow it away. The canisters are like a 1 liter water bottle in size, and they are really light, so easy to put them in a bag, etc.

As I am moving to the USA, I would like to sell the leftover. I still have 4 canisters left, they are unopened and sealed. I ask 6 euros/canister, and I can also ship them.

Let me know if you are interested, I am leaving in 2.5 weeks.