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New To the group, but with some helpful tips (Read 1919 times)
runyan86
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New To the group, but with some helpful tips
May 3rd, 2009 at 1:54am
 
hello everyone!
You have no idea how amazing this site is. I am a 28 year old who along with my father suffer from this horrible condition. I still remember my first attack around 8 years ago. Swore that I was going to die. Stinking cluster went on for three days.....rough start.  Both my father and I combat attacks with Indomethacin. (yes, I know that it is the primary med for gout, but it is the only thing that works!!) At the first sign of an attack, we will pop one of these and then give it about 5-10 min. Not only will it knock it out, but it will also give you a great night sleep. Another thing that helps is nitrous oxide gas ( I am a dentist, so its easily avaliable). I actually just finished a bout with clusters this last week and the combo of the pills and N20 gas worked great. Be careful with it though, both of those meds can lead to serious problems. Just recently obtained an imitrex pen for sub-Q injections. If anyone has used em, please let me know how you like it, the rep who gave it to me uses em and says that it will get your heart racing pretty bad.
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ClusterChuck
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Re: New To the group, but with some helpful tips
Reply #1 - May 3rd, 2009 at 2:12am
 
I would be REAL leery about using the N2O to abort an attack.  Maybe it does work, but pure Oxygen is MUCH safer, and is extremely effective.

Chuck
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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
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wildhaus
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Re: New To the group, but with some helpful tips
Reply #2 - May 3rd, 2009 at 2:43am
 
Providing you are a dentist, as you have stated in your post,
don’t you think it is “a bit” risky to suggest the use of Nitrous oxide, commonly known as "laughing gas" with out proper knowledge of administering it,

It is a drug!

and if I am not wrong, it is (in many places) prohibited to distribute nitrous oxide for the purpose of un-trained human consumption.

Like Chuck, I would say "Oxygen is MUCH safer, and is extremely effective"

"O2 can do"........

Michael
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Guiseppi
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Re: New To the group, but with some helpful tips
Reply #3 - May 3rd, 2009 at 3:06am
 
Welcome to the board! Do read the "oxygen info" tab on the left. It details how to use oxygen as an abortive. I can knock an attack out in 6-8 minutes using oxygen. 31 years of the beast and it's still my first line and most effective abortive.

I've used the imitrex stat pen. Didn't have any heart issues. Makes my skin feel like snakes crawling just below the surface! It does knock a CH out very quickly for me. Given my druthers though I always reach for the 02 first!

You also didn't mention any preventative medications. A med you take daily to reduce frequency and intensity of attacks. I use lithium, verapamil is also a very popular prevent. Others to read about on the meds board and discuss with your neuro.

Welcome to the fun house, hope we can help you reduce the pain department a bit!

Joe
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BarbaraD
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Re: New To the group, but with some helpful tips
Reply #4 - May 4th, 2009 at 7:28am
 
Glad you found something that works for you, but a lot of us have found that N20 triggers CH in us and are VERY leary of it. (I won't let the dentist near me with it - shots are NOT bad at the dentist office Smiley)

O2 is (for most of us) our first line of defense and (usually) easily obtained and safe for long term use.

Welcome to Clusterville.

Hugs BD Kiss
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runyan86
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Re: New To the group, but with some helpful tips
Reply #5 - May 6th, 2009 at 12:57pm
 
guess I need to clarify something from my original post. I was not promoting the use of nitrous gas use by anyone without a medical license. Just was saying that since I am licensed to administer it, I use it to aid in aborting attacks, thats all. Most of the time 10 minutes or so will really help while the indomethacin kicks in. But I will try using just pure 02 since so many have had success with it.
Glad to hear that the imitrex pens work good. Havnen't reached for it yet, but I spent three hours last night fighting a cluster that my indomethacin couldn't touch. Then woke up to yet another one. Good times. Hope that this clears some stuff up.
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Guiseppi
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Re: New To the group, but with some helpful tips
Reply #6 - May 6th, 2009 at 1:05pm
 
Yeah by all  means get a decent oxygen set up that you can keep with you. When I'm on cycle that E-tank leans against my bed so when I wake up already at a 3-4, I can fire off the 02 right away! But with oxygen, time is of the essence! A delay of even a few minutes dramatically increases my abort time. Wishing you a short cycle and some pain free time soon!

Joe
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ClusterChuck
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Re: New To the group, but with some helpful tips
Reply #7 - May 6th, 2009 at 1:16pm
 
(Geeze!  It seems like I am following Joe around ... Well he IS kinda cute ... with a REAL nice butt ...)

Anyway ...

Make sure that you use the oxygen properly.  If it is not used right, it is worthless.  You need AT LEAST 15LPM (higher is better and faster) and a non-rebreathing mask.  The ones that most vendors supply will get you by, in a pinch, but the Cadillac of masks is the O2PTIMASKTM.  Fortunately, Deej has those in the CH.com store, behind the tab on the left edge of your screen.

You should also make sure you know all that is behind the tab oxygen info too.  Even though you are familiar with oxygen treatment, our use is unique, and needs special treatment.

Good luck, and let us know how you are doing!

We care (or we are just a bunch of nosy busybodies ...)

Chuck
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chrisw
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Re: New To the group, but with some helpful tips
Reply #8 - May 7th, 2009 at 11:42am
 
Read the imitrex tip on the side.  It is a great tip, and it helps cut down on the heart palpatations that trex can cause.  Also, it helps conserve the imitrex, which alot of us know,  is more valuable than gold!!!!!

good luck,
try the O2
chrisw
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Linda_Howell
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Re: New To the group, but with some helpful tips
Reply #9 - May 7th, 2009 at 6:25pm
 

Since no one else has said it I will.


You don't actually say that you were diagnosed with CH.

Indomethacin usually doesn't have any effect on Cluster headaches.  But it does on Paroxsysmal Hemicrania.   In fact,  that is one indication of PH....it reacts so well to Indomethacin.

here is a chart for you to read.

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Jeannie
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Re: New To the group, but with some helpful tips
Reply #10 - May 8th, 2009 at 3:55pm
 
I was wondering about the Cluster that lasted for three days?  This is not typical of CH either.  

I have great success with my Imitrex pen.    I don't feel my heart racing but my skin feels tight, especially in my face.  I am usually pain free within five to ten minutes after I inject myself.   Please do check out the 02.

Pain free wishes,

Jeannie
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« Last Edit: May 8th, 2009 at 3:56pm by Jeannie »  

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runyan86
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Re: New To the group, but with some helpful tips
Reply #11 - May 9th, 2009 at 1:15pm
 
Linda, I was diagnosed by a physician and neurologist. The only thing that leads to PH is the fact that indomethacin works- according to the chart that you sent the link to. However, I have talked to several neurologists and oral surgeons that have prescribed that medication for CH when other treatments haven't helped. Indo isn't a golden bullet by any means. I have had several attacks that haven't responded at all to it, but have also had plenty where it helps.
Jeannie, didn't find the place where I said three days, but it may be a typo on my part; the attack that I was talking about lasted three hours. Worst one to date. Did use 02 for the first time and loved it. used 15L/min and was blown away at how well it worked. Thanks to everyone who mentioned O2 tx.
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Guiseppi
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Re: New To the group, but with some helpful tips
Reply #12 - May 9th, 2009 at 5:38pm
 
Yeah oxygen has totally changed how I look at CH. Knowing there's a better then 90% chance 02 will kick his arse in less then 10 minutes kinda takes a lot of the beasts power away. Really glad it's proving as effective for you.  Smiley

Joe
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