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Message started by shane mac on Aug 10th, 2011 at 11:04pm

Title: cluster monsters
Post by shane mac on Aug 10th, 2011 at 11:04pm
Hi fellow sufferers, nice to know I am not alone because it's hard to explain the pain to anyone else. Cheers Shane Mac New Zeala
nd :)

Title: Re: cluster monsters
Post by RichardN on Aug 11th, 2011 at 12:13am
Hello Shane Mac & Welcome to Clusterville

  We have several members here from New Zealand.

  Tell us a bit more about yourself.  How long have you known our beast?  Do you have working preventative(s)  Do you have working abortive(s) . . . especially oxygen?

  Much information here from people who truly understand your pain . . . you're no longer alone.

  Read, read, read . . . ask any questions you may have.

    Be Safe,   PFDANs

       Richard

Title: Re: cluster monsters
Post by shane mac on Aug 11th, 2011 at 12:54am
thanks mate. Have had them for about 2 weeks. Spent 7 days in hospital. Am on prednisole. The doctor said I am not allowed o2 in my home under nz law for some reason. I will investigte further as it helped a lot in hospital. I have noticed sufferers drinking red bull etc for relief. When do you have this, assoon as symptoms start? cheers ShaneMac

Title: Re: cluster monsters
Post by Mike NZ on Aug 11th, 2011 at 2:28am
Hi Shane

Your doctor is totally incorrect about having oxygen at home in New Zealand. I should know as I've got it in my home, supplied by the local hospital and by BoC.

For info about how I got my oxygen, read the following topic - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

A steroid, like prednisone, is normally used as a short term preventive whilst a longer term one, like verapamil, lithium or topomax builds up to an effective level. Staying on steriods long term is not good for your body as it can do serious damage, hence restricting it to a week or two as a transitional preventive.

Have you got something like verapamil, lithium or topomax to use as a preventive?

Have you got anything to abort a CH? In NZ you can have Imigran (known as Imitrex in the US) on perscription which only costs NZ$3 per perscription. Make sure you get the injectable form and not tablets.

Drinking a Red Bull or similar drink with caffeine / taurine at the start of a CH can help drop the intensity and / or duration. I just drink the can as quick as possible, normally in 30 seconds or less.

Where are you in NZ? I'm in Auckland (although away on holiday at the moment).

Let me know if you've other questions as I've had plenty of experience in getting my CH treated in NZ.

Keep reading and asking questions.

Title: Re: cluster monsters
Post by shane mac on Aug 11th, 2011 at 6:06am
Hi I've got maxalt but they only gave me 5 tabs when I l left hospital and i'm scared to use them all in case there is an 11 or 12 that I dont yet know about( pain wise )

Title: Re: cluster monsters
Post by Mike NZ on Aug 11th, 2011 at 7:40am
Maxalt melts can work with CH, but they are nothing like as effective as oxygen or imigran (imitrex).

I'd work with your GP / neuro to get both.

Have you read through the topic around getting oxygen in NZ?

Title: Re: cluster monsters
Post by Guiseppi on Aug 11th, 2011 at 9:06am
I'm glad Mike chimed in. Oxygen should be your first line abortive. I kill mine off in about 6-8 minutes by huffing the 02. You have to get on it quick, for me a delay of even a few minutes can double the abort time.

Time to become a bit more vocal for yourself and push for the relief you need. Thanks again Mike for steering him thru the medical maze on your side of the world.

Joe

Title: Re: cluster monsters
Post by RichardN on Aug 14th, 2011 at 1:56pm
  Another vote for 02.  My miracle abortive.  I can't use sumatriptans due to some artery blockage and high cholesterol . . . so 02, energy drinks, ice packs are my only abortives.

   Be Safe,   PFDANs

     Richard

Title: Re: cluster monsters
Post by B.Baer on Aug 27th, 2011 at 7:27pm
Since high flow 02 and demand valve, I've never looked back or had a faster abortive.... Good luck .

Title: Re: cluster monsters
Post by Barry_T_Coles on Aug 27th, 2011 at 11:42pm
Hi Shane

Welcome aboard, I see Mike has already taken you under the wing, listen to him mate he knows his stuff about getting what you need over there.

O2 Rocks, I can kill a hit in just a few minutes.

All the best from over the ditch.
Cheers
Barry

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