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Charlie1980

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Hello
Jul 16^th, 2008 at 12:22pm

Hello Everyone,

How are you all doing? My name is Charlie, and this is my first post. I am having a viscious attack of headaches that has lasted the last six weeks. They are focused around my right eye. They feel like some one has driven a hot rail road spike through my right eye and is raking away at what is left of my poor brain. The attacks are nightly in the late evenings before bed. They last a couple of hours and then they begin to fade. However, during the day there is a shadowy presensense lurking. It is like the pain is mocking me during the day just threatening to come out to play.

I have been through two primary care physcians the first one refused to treat me and the second one past me on to a neurologist. I go see a neurologist on July 29, 2008, and I am kind of scared of what they will find. But, at least knowing what they are fighting will be better than not knowing.

I am currently taking 100 mg of Topamax at night and I have been on Topamax for about two weeks, and I am taking Immitrex, but I am not having much success with the immitrex.

I have had success with the energy drinks thanks to you all. I have been lurking on the board for a few days, and I tried one. The taste will take some time to get used to, but it did help.

Cheesy

Charles

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thebbz

Ex Member

Re: Hello
Reply #1 - Jul 16^th, 2008 at 12:41pm

Hello back Charles,
The pain you are having during the daytime is what we call a shadow.
Here are the accepted treatments.
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

I would suggest 02.
Over the counter Melatonin will most likely help with the nighttime hits.
3 to 9 mg at bedtime.
Let us know how it goes with the neuro.
Imitrex works best using the injection. lots of options for you
Dont forget to breathe and CH will not kill you. Wink

all the best
thebb

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Hello Reply #2 - Jul 16^th, 2008 at 12:55pm Hi Charles! Welcome to the board. Have you taken the cluster quiz linked over on the left? It sounds like you are in the right place anyway. Let us know how we can help... -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

Charlie1980

CH.com Newbie

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Posts: 3

Re: Hello
Reply #3 - Jul 16^th, 2008 at 2:14pm

Thanks Guys for the warm welcome, it would be a big help if you could help me prepare for my neurology consult. I am kind of scared about seeing the neurologist. I do not know why for sure, but for some reson the idea kind of scares me. I guess it is the way my primary care doc went about it. He was rather blunt when he said there was nothing he could do for me. But, I guess at leat the primary care doc saved me some time and pain by admitting he couldn't help Undecided

.

Charles

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thebbz Ex Member	Re: Hello Reply #4 - Jul 16^th, 2008 at 2:48pm Print out the first link. You will need to know what will work for you What questions do you have ...we will try to help. The neuro will want to do an MRI to eliminate other causes of headache. Start a headache diary. Write down your symtoms so ya dont get nervous and forget. It's easy. Your the one hurtin...not them thebb
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Ernie Moss aka Wishbone

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Birmingham, AL
Gender: male

Re: Hello
Reply #5 - Jul 16^th, 2008 at 5:39pm

Regarding your appointment with the neurologist by all means take thebbz's advise and write down all of your symtoms regardless of how minute you make think they are because every clusterhead while the same is different and if you are nervous going in you may have a tendancy to forget something. Additionally, if you diagnosed as a CH, as I was immediately, don't get alarmed if the doc orders a battery of tests. I was, cat scan, mri and spinal tap just to make certain that there was not some other problem. Fortunately or unfortunately there was not, so I am a CH. Do get on the board and learn about the meds that work for some CH. Some work for some and some don't for others. As a preventative the neuro may start you on verapamil and possibly verapamil plus lithium. This may or may not work. Some then add topomaz. As abortive they may prescribe imitrex or zomig. It seems most CH prefer injections, nasal has worked fine for me. However, for abortive O2 is by far the best for me, but it may not be for you, but you must have a regulator with a flow rate of at least 15L preferably 25L. A lot of neuro's don't understand this and it can be difficult to get prescribed. I was lucky. Good luck and hopefully your neuro is one of the ones that understands at least a little about Cluster Headaches. 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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kevmd

CH.com Hall of Famer

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Who needs a hypothalamus
anyway?

Posts: 524
x0|philadelphia|USA||0|0|PA,Pennsylvania
Gender: male

Re: Hello
Reply #6 - Jul 17^th, 2008 at 11:52pm

go in and ask for
1) Preventatives like verapamil and lithium
2.) prednisone. This will give you pain free time while the preventives kick in.

3.) abortives...imitrex and O2, o2, and o2. Ask for sa script foe E-tanks, and the bigger one (not sure of the technical term) with a non rebreather mask and a regulator that goes at least 15lpm

Its just another doctor. Don't be afraid. This just may be the person who will help you

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PHILADELPHIA PHILLIES 2008 WORLD CHAMPS

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hello Reply #7 - Jul 18^th, 2008 at 12:41am Hiya Charles! Welcome! Jeannie
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello Reply #8 - Jul 18^th, 2008 at 1:37am You've been inundated with some excellent advice so I'll just offer my welcome and warm wishes for a SUCCESFUL visit with the neuro, good luck!! Guiseppi
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Charlie1980

CH.com Newbie

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Re: Hello
Reply #9 - Jul 18^th, 2008 at 10:11am

Thanks for all the wonderful advise, sorry I haven't gotten back sooner I could have sorn WWIII started in my head yesterday. I have been trying to track this cycle on my word program so I have something to show the neuro when I go in to see the doc. And, I am making a list of meds I have been on, and what works and doesn't along with a questions list. I am still awaiting the packet the neurologist is sending me in the mail to fill out. Hope you all are having pain free days.

Charles

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BarbaraD

CH.com Alumnus

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Hugs to ya

Posts: 8333
Douglasville, TX
Gender: female

Re: Hello
Reply #10 - Jul 20^th, 2008 at 8:48am

Charlie,

One thing that hasn't been mentioned -- ASK the neuro what he knows about CH.... how many CH patients he treats (this could be important). some neuros don't have a clue about CH and if this is the case you need to find someone else (it's your head).

O2 is our first line of defense (about 70% of us swear by the stuff) BUT it has to be RIGHT -- at least 15 liters per minute (the regulator is important) - preferably 25 liters per minute (night and day with the 25 liter regulator) and a NON-REBREATHER mask!!!

Read info on left about O2 and take it with you if you need to.

Remember that the neuro is "practicing" and this is YOU he is practicing ON. You must be your own advocate in your treatment. Don't be a horse's rear, but KNOW what you need when you go see him/her.

I guess one thing to remember is what works for me might not work for you. We're all different and sometimes it takes a little while to find what works best for each of us. Be sure you have a neuro you can "work" with to find your magic bullet (something that will give you some releif).

Hugs BD

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