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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New here!
        
(Message started by: Moridin2002 on Mar 12^th, 2007, 10:17am)

Title: New here!
Post by Moridin2002 on Mar 12^th, 2007, 10:17am

My my name is David and im 22 years old soon and i live
in Sweden. I am what u can call a typical horton sufferer.
I get my attacks every year around march, april (soon)
And it was untill 2 years ago that they told me i had
hortons.

I get around 1-2 attacks 5-7 days per week and
my period are always around 3-4 weeks.

I have tried imigran injections before but they sucked
bigtime. sure they aborted my attacks but i would get
5-7 attacks per DAY! instead.

This time will be the first time i will use the o2 and im wondering if 7 liters per minute will be enough?
The doctor told it should work but i dont have any 10 lpm thingie to try and the thought of having to w8 like 2
weeks to get a new one is....

Anyway im glad that i found this place and knowing
that im not alone :)

Title: Re: New here!
Post by Bob_Johnson on Mar 12^th, 2007, 12:01pm

Your personal experience with the oxygen rate will answer your question--there is some individual variation.

I hope that you are using a med to prevent/reduce the attacks.

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

See the last site for a good overview of current meds.

Title: Re: New here!
Post by Moridin2002 on Mar 12^th, 2007, 12:50pm

The doctor im seeing right now is really great and he
is a neurologist (spelling) in one of swedens biggest hospitals.

The imitrex injections (imigran in sweden) help me to
abort the headaches but i get much more attacks per day if i use them so i only take them if i get a 10.

As for preventive medicine i really dont think its necessery for me. When im reading here i see alot
of people get side effects and all kinds of weird stuff
and even then it maybe only reduce my attacks.
As it is now i only get 1-2 per day and sometimes i only get 1 attack every 2 days and almost never shadow
headaches unless i take the imitrex injections.
If take the injections i will get painfree but the
next time i will get an attack and not use an injection
i will have shadow headaches for like the whole day.

Im also curious of how much u guys have to pay for ur
oxygen tanks. In sweden it costs around 30 $ for the
delivery and then 25$ for each tank. When u have paid
a total of 250$ everything gets free for a year.
to have the tanks costs around 15$ each month
but i think that also gets free after the total cost
of 250$.

Also the Neurologists have made o2 an official treatment
now for cluster headaches so its kinda easy to get a tank now and they are also very interested if 7lpm will
be enough. Its almost that i want the cluster headaches
to burst out so i can see if the o2 helps.

Its also very annoying knowing that every single day
i know that it can come back especially since i have a
new job.

Anyways, i hope to see some answers :)

Title: Re: New here!
Post by LeLimey on Mar 12^th, 2007, 4:43pm

Hej David :)
Its nice to meet you! I love Stockholm (and many other parts of Sweden) I used to spend a lot of time there and it was very much a second home.

To answer your question, 7lpm wouldn't be enough for me, I start at the full 15 LPM and I use a clustermasx which has a much bigger bag than your standard non rebreather mask (see www.clustermasx.com )

I'd definitely recommend starting higher and reducing the amount of litres per minute you use rather than starting low and then trying to get a new set up in order to increase it. With a higher flow regulator you will be able to adjust your intake to your own needs but if you start with a low one you aren't just wasting your time but your money too. This pain is too awful to contemplate not getting relief as soon as you can as well.

I understand your comments re imigran and preventatives so I thought I'd suggest some of our "home remedies" for you in the hope they might help. Ice or heat work for a lot of us - what works for one is a trigger for another though. For instance cold really helps me but heat makes things much worse whereas others find heat packs or a hot shower with the water blasting onto their face really helps. I'm sure you know which of those would help you by now! I can honestly say a bag of frozen peas wrapped in a tea towel is a very good friend of mine!

Strong coffee drunk quickly at the first sign of a hit starting is very effective too as caffeine is a vaso constrictor (as are triptans) Think Lofbergs but not Fika! No mazarins this time!

Red Bull or other high energy drinks are very effective too but yet again you need to drink it (fast) as early as possible. No sipping, just drink it quickly. Not only do these contain caffeine but they also have taurine which increases the effect of caffeine - sort of like a turbo boost. This has saved my bacon more than once!

Remember we'll answer any questions you may have to the best of our ability so please don't be afraid to ask.

You may also like to contact a very good friend of mine on the OUCH Family Services Team. Svenn is from Norway and is very well known in the Cluster Headache community there. He has given many talks on CH and has been a major force in setting up clustercompagniet. I'm sure some of your neuro's will have heard him speak.

You can contact him via e-mail at familyservices@ouch-us.org
His advice and help will be invaluable to you as well.

I hope this helps!
Helen

Title: Re: New here!
Post by Moridin2002 on Mar 12^th, 2007, 4:53pm

Actually i bought myself some frozen peas yesterday @
work and a big pack of redbull so im all set there :)

Last cycle i used a frozen pack of raspberries and they
eased the pain something atleast. Im very happy
about the o2 answer and i will call my doctor immidietly.
If im lucky my dad can subscribe it for me since he is
a doctor aswell :)

Title: Re: New here!
Post by LeLimey on Mar 12^th, 2007, 5:13pm

Great news David - lets hope you get it soon :) I'm glad you have some other remedies to hand to but I hope you don't get to try them out
Helen

Title: Re: New here!
Post by ClusterChuck on Mar 13^th, 2007, 8:40am

Most of us need more than 7 lpm, in order for it to work. BUT, there have been times where I was forced to use 8 lpm (on a commercial flight), and I have figured a way to get it to work ... Not as fast, mind you, but it did abort. I SLOWLY (hard to do) inhale, and then hold it, until the bag fills again, and then exhale, and take the next breath.

Something you might try, that works for some, without using bottled O₂ ... ... just hyperventilate. Do it to the point that you feel dizzy, and even your finger tips tingle. It has something to do with not giving your body time to produce CO₂, and going into O₂ overload. Try it, it may work!!!!!

GOOD luck!!!

Chuck

Title: Re: New here!
Post by Superpain on Mar 17^th, 2007, 4:04pm

I find holding my breath with O2 is far more effective than continuous breathing. And with the clustermasx you can just use one of the larger bags to build up a supply, so 8lpm would work fine.

I've been mostly absent lately so I don't know where the clustermasx comes from... An angel sent me one. But maybe someone around here can help you get one. It's WAYYYYYYYYYY better than any other mask. The only way to go!!!!

Title: Re: New here!
Post by ClusterChuck on Mar 17^th, 2007, 7:33pm

They can be ordered here: www.clustermasx.com

The Rolls Royce of masks ... yet only $25.00 USD!!!! WELL worth the price!!!

Chuck