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tried  everything (Read 1974 times)
wayne mc
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Goulburn, NSW Australia.
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tried  everything
Sep 5th, 2008 at 8:10am
 
Hi everyone,
probably confused everybody with my last question, and should of explained myself better . will start again.
I am a 45y old male builder from New south wales in Australia, with two children and STILL married.
I have suffered from these mongrel headaches for the last 9 years
and have visited numerous specialists who I am convinced have no idea. During my last cycle of CH one " World class surgeön" recommended that I have nerves cut in the right side of my head. now I have CH and the right side of my head is numb.
So any pressure points that I did have to massage/bash are gone.
After this disaster I went to another specilist and he recommended
a treatment of injecting Botox  (which is mainly used by women to get rid of wrinkles) which I had done,my cycle ended 3 to 4 weeks later but as this cycle was in its tenth month it was time to end  anyway.

So before I put myself though these injections again I was wondering
if anybody else has tried this. (these are very painfull and expensive)

thanks Wayne


PS my wife says that this botox is a waste on me and she wants it.


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If I knew I would live this long, I would of looked after myself better!
 
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n_lighty37
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Re: tried  everything
Reply #1 - Sep 5th, 2008 at 9:15am
 
Wow, it sounds like you've had a rough go of it so far.

I know there will be some other members along later to give you more detailed answers, but I can tell you that most people here recommend a preventative and an abortive.  The surgeries and the injections seems very drastic to me.

I take 480mg of Verapamil/day and use 100% pure medical grade oxygen through a non-rebreathing mask at 15 liters per minute to stop my headaches.  It works like magic.  I also have Imitrex injections as a backup.

If I were you, I'd try some of these less invasive things first.  Maybe someone here from your area could recommend a good doctor too, it sounds like you need one.

Good luck, here's wishing you some relief Smiley

P.S.  Emphasis on the good doctor part.  Please make sure that whatever you do, that you aren't trying to fly these on your own.
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« Last Edit: Sep 5th, 2008 at 9:17am by n_lighty37 »  
 
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BarbaraD
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Douglasville, TX
Gender: female
Re: tried  everything
Reply #2 - Sep 5th, 2008 at 9:31am
 
Wayne,

Sorry you're suffering so much. O2, O2, O2....

I too went thru the surgery (ya get used to the numbness after about 10 years - had mine in 99). Didn't help a lot - later that year I discovered Topamax and it has been my miracle drug (preventative).

Botox has helped a few here, but not many.

Energy drinks at the first sign of a headache works for a lot of us (Red Bull - one with caffeine and at least 1000mg of Taurine in it). Strong coffee helps me if I get to it as soon as I feel a twinge of a headache starting (most of the time). But O2 has been my saviour..... I swear by it and it's the least expensive and won't hurt you.

Read the info on it (Chuck posted the "how to" somewhere on here - read it and do what he says - he knows. Batch is our resident O2 expert also - he can give you details on the why's and wherefores).

Hope this helps some.

Hugs BD
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What don't kill ya, Makes ya stronger!
 
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wayne mc
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Goulburn, NSW Australia.
Gender: male
Re: tried  everything
Reply #3 - Sep 5th, 2008 at 9:40am
 
thanks for reply, tried 02 but seemed to make them worse, and nearly all the meds that I have seen on this site, probably to impatient maybe need to start again.

wayne
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If I knew I would live this long, I would of looked after myself better!
 
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BarbaraD
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Re: tried  everything
Reply #4 - Sep 5th, 2008 at 9:50am
 
sometimes ya gotta give the meds time to work.

When did you try the O2 and how did you use it. A lot of people here tried it WRONG and it didn't work. It needs to be at least 15 liters a minute with a NON-REBREATHER mask. If you haven't done it that way - it might be worth another try. And no, it doesn't work for everyone, but nothing does. Most of us have used trial and error to find something that works.

Ice or heat (everyone has a different take on this one) on your head when getting hit sometimes helps. I keep frozen peas in the freezer for ice packs. But sometimes almost scald my head in the shower - just depends on what feels right at the time.

Anyhow, Patience (I know I know - I don't have any either). Ya hurt and you want relief RIGHT NOW! We do understand and we're her for ya....

Hugs BD
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What don't kill ya, Makes ya stronger!
 
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n_lighty37
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Re: tried  everything
Reply #5 - Sep 5th, 2008 at 9:56am
 
Barb is exactly right.  It takes a lot of trial and error sometimes to figure out your magic.  For some reason, there just doesn't seem to be a universal fix.  It's part of what makes this so frustrating for me in the first place.

Don't give up buddy.  The energy drinks and such don't anything for me, but the ice packs ... I love my ice packs.  It all just depends on what feels right at the moment.  Good luck.

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wayne mc
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Live life in the fast
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Posts: 13
Goulburn, NSW Australia.
Gender: male
Re: tried  everything
Reply #6 - Sep 5th, 2008 at 10:02am
 
yeah that sounds like me, must be the builder in me has to happen NOW. I will look back into the 02 dont think I had the right mask, but do remember turning the reg right up  also remember it hurt. I think I will give the botox a miss and try another doctor, (seen most of them),
but thanks to you guys and this site, I have alot more information to hit them with.

wayne
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If I knew I would live this long, I would of looked after myself better!
 
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ClusterChuck
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The BEAST rises again,
and again, and again,
and .


Posts: 5394
Greenville, North Carolina
Gender: male
Re: tried  everything
Reply #7 - Sep 5th, 2008 at 10:07am
 
Information is good, Wayne!  The more YOU learn, the more you can help the doctors.  Sadly, most doctors don't have a clue as to how to deal with clusters.

Even that senile old wench, BarbaraD had a moment of lucidity, and gave good advice!

GO OXYGEN!!!


Keep in touch, and let us know how treatment is going.

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.
ClusterChuck  
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Ernie Moss aka Wishbone
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Birmingham, AL
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Re: tried  everything
Reply #8 - Sep 5th, 2008 at 10:45am
 
As several people have said what works for one does not work for others, but I don't think you will find many that O2 has not helped.  As someone pointed out proper administration is so important, but depending where you are having pain at first the O2 may increase the pain.  I am a HUGE proponent of O2, but there are times if my pain or a portion of my pain is in the sinus area when I first begin breathing the O2 (but I take deep deep breaths at first) my pain will be more intense, but honestly in just a matter of minutes the pain subsides and verses wanting to yell from pain I want to leap for joy.  Again it may not work for you, but it is a heck of alot cheap, much less of a hassle than than what you have and are going through so I think you owe it to yourself to give it another try but this time with the proper mask and regulator.  You can find the proper mask here at the left on oxygen info and can get the regulator on the internet.  I know Chuck says he gets his on e-bay, but I know the home really gets them for him. (Sorry Chuck I couldn't resist  Grin).  Any event I do hope you find some relief some how so you are PF soon.  Wishbone.
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It don't cost a nickel to be nice and by being so you might just make someone's day.&&Ernie Moss
 
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thebbz
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Re: tried  everything
Reply #9 - Sep 5th, 2008 at 11:10am
 
Quote:
PS my wife says that this botox is a waste on me and she wants it.

Your wife is a smart girl, I would agree with her.
all the best
thebb
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