Hi

I am a 26yr old female from Nz, and have been suffering for 4 years now. I am currently in my worst cycle yet, and finding it very hard to cope. My dr is all about the pills, which dont work.

I am currently taking 2x 50mg of sumatriptan for an attack. They kind of worked twice, but now not at all. I find myself drawn to a hot shower. So have been having a lot of 2am showers lately. I slump in the bottom of the shower for 40 minutes or so. Sometimes its completely stopped the attack, other times I have to get back in after being out for 5 - 10 minutes.

I am going back to my dr, and not leaving until i have a referal to a neuro, and some decent pain killers.

I feel really overwhelmed and sad about it all at the moment. I worry that It's too much stress for my family. I hate that it effects my kids and husband so much. But i don't know what to do.

Keep your chin up.  We have all been there and we are all doing the best we can.  The veterans will be along and will give you some really good advice.  In the meantime read everything and print out info.  The better your informed the better you can fight for yourself and get what you need.  O2 is a MUST!

First you need a script for 02 w/non rebreathable mask with at least a 15 LPM flow rate.  This is a must and has made a huge difference for me.  Since having this and along with the Imitrex I have had very few kip 8,9 or 10's  All are doable with the O2.  Most have been aborted within 20 minutes.

Second the pills take too long to work on their own.  I use nasal sprays and most will use the Imitrex shots.  They will work the fastest.  I'm able to use the pills now because I have the O2 which keeps the pain at bay until the pills will kick in.  I'm still too chicken to rely souly on the O2 but with the pills and O2 I'm OK within 20 minutes.

There are some that will tell you how to use Energy drinks to help abort an attack.

I'm a female 48 now.  I managed to carry two babies to term while dealing with these and raise a family without meds it was hell back then.  It's a hell of a lot better with this site and the help you will receive here.  As for the stress on the family don't worry about that right now.  When you are set up better to fight these attacks it will become easier for them to deal because it will be easier for you to deal.   You will need a strong support system if not at home then come here.  This is home for many of us when we are in cycle.  You can cry, vent, scream and just read but we all understand.

I can't ever say you won't get another attack but what I can say is being here you'll have the information you need in order to have less pain while in cycle.

Blessings,
Sami

From the sounds of things, an 02 prescription is not easy to get over here.

I do however, have access to dive tanks. Will these suffice?

Thank you for your replies so far. I am slowly working my way through the site.

Thank you Barry.

That's great.

Is it Mike NZ?

I just found a huge post regarding oxygen in nz from him on the boards. YAY!

shifto wrote on Feb 2^nd, 2011 at 7:27pm:


Hi and yes, that was me. And thanks Barry for the heads up.

I hope that thread helps with a lot I've learnt with the trials and tribulations of getting oxygen here in NZ, but it's well, well worth the effort in getting it for how it's such a life changer when you can kill off a CH in minutes.

Here in NZ (and pretty much everywhere else) most doctors know next to nothing about CHs and what they do know is normally well outdated.

First off I'd skip the use of pain killers as they are pretty ineffective with CHs as they don't touch the pain and are quite likely to cause rebound headaches, never mind the problems that narcotics can cause (which most doctors give out far too easily and often).

Then sort out a good preventive that will stop you getting some of your CHs. There are quite a few available but verapamil works pretty well and is available here in NZ. A typical effective dose is often between 360 and 480mg per day, but some go to over double that. This is well outside of the normal doses used for treating blood pressure, so your GP may be reluctant to proscribe this at first.

Ask about a prednisione taper as this will act as a short term preventive whilst the verapamil builds up as it takes about 2 weeks to become effective. Typically the prednisione will start at around 60mg and taper off over 2 weeks. You don't want to be on it too long as it can cause issues if taken long term.

You'll have no doubt read about energy drinks here, Red Bull and Mother are the ones that are readily available. I stock up when they are on special at Countdown or New World which seems to be every third week (NW this week).

It sounds like you've got sumatriptan tablets for aborting CHs. These aren't too useful for aborting CHs as they take about 20 minutes or so to be absorbed, which is far too slow. There is an injectable form which is called Imigran here (imitrex in the US) which takes effect in minutes, although it's pretty expensive so GPs are reluctant to proscribe it.

For aborting CHs, oxygen can be simply amazing and side effect free. Following the oxygen link info I average aborting a CH in about 6 minutes, so I'd really strongly advise you to go down this route.

Getting oxygen via the hospital home oxygen service is not too easy (I've done it) as the MoH guidelines specifically exclude the use of home oxygen for treating CHs (crazy).

So what I'd do, at least for now until you work on the home oxygen route, is to arrange it yourself via BOC. To get medical oxygen from them you need a letter from a doctor saying that you need medical oxygen for treating CHs, otherwise they won't supply you. So I'd ask your GP to write this as a letter. Do keep it as if you're outside of NZ, e.g. over the ditch in Oz, you'll need it there too.

Once you've got this, go to the nearest BOC Gas and Gear outlet (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and click on the Find your nearest link at the bottom right).

You can open an account there. They normally take a day or so to open an account, but if you explain it's for medical oxygen and you'd really appreciate it being done that day they can get the account opened in a few minutes (I did it at 4.30pm on a Friday arvo).

You can pick up oxygen cylinders there. I use E cylinders at home and have a A cylinder for out and about which I carry around in a back pack. You pay a rental fee on cylinders which works out about NZ$15 per month with virtually no difference on the cylinder size. This is paid monthly.

You pay for the gas in the cylinder when you pick it up, with the cost depending on the cylinder size, with larger cylinders being proportionally a LOT cheaper.

They have regulators that go to 25lpm which you can rent or buy (I paid for mine).

They have cheap non-rebreather masks that are ok, but I'd get a mask from the CH.com store as it works out a similar cost to the disposable ones and there is simply no comparison with the quality (I got two).

Just about to send you a PM with more info...

shifto wrote on Feb 3^rd, 2011 at 3:51am:


The search page has:

• Number/ Street       - leave blank
• Town/Suburb - just put the nearest city / large down, e.g. Wellington
• Region - the region you're in, e.g. Wellington
• Service Type - tick "Gas and Gear"

Gas and Gear are BOC outlets run by BOC. Distributors are other companies that carry some BOC lines.

If you're a long way from a Gas and Gear, try contacting the nearest distributor to see if they can help.

Or give them a ring on 0800 111 333.

Yep.............thanks Mike.

Mike NZ wrote on Feb 3^rd, 2011 at 1:17pm:


I'll second that.

Cheers
Barry

Samiam wrote on Feb 3^rd, 2011 at 7:25pm:

The very same thing has happened to each of us to one extent or another, which is why we continue to stick around - even though some of us haven't been hit in a long, long time.

In 50+ years on God's green earth, the people I call my very closest friends are the ones I've met here.

Great news! Congratulations, and while you're at it, don't forget the taurine energy drink thingy. I found it really does help O2 abort a hit. Blessings. lance

That's the BEST news!!!  Having all the right weapons in your arsenal sure takes some of the "scary" out of CH doesn't it? I'm really glad for you!!!!!

Jeannie

All of you are awesome!  Someone new comes to the site and is in direr need of help and not one but many jumped to there aid and within days have them set up to deal with something most don't understand.  Talk about "Paying it forward"....Your all my hero's.

Blessings,
Sami