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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New guy
        
(Message started by: wolf29 on Apr 4^th, 2007, 2:36pm)

Title: New guy
Post by wolf29 on Apr 4^th, 2007, 2:36pm

Hello everyone...I have been suffering from clusters now for about 5yrs but wasn't diagnosed until last week. The doctor gave me some Imitrex, and told me when I feel one come on take an Imitrex, caffeine pill (No Doze) and about 4 Advil...we want to see what it's gonna take to help kill these things. Been keeping a detailed "diary" about what I've eaten, what time they come on, how often and such, if the Meds helped, and to maybe get on some preventatives like Verapamil or something. But am looking forward to finally trying to get this Beast under control, and to also get to know other people here.

wolf29

Title: Re: New guy
Post by Guiseppi on Apr 4^th, 2007, 3:19pm

Welcome to the board, your doctor at least recognizes the condition which is a plus. Your regimen concerns me!

If the imitrex is in pill form it probably won't help much. Most of us ramp up on the pain scale too fast for a pill to help. I use imitrex as a last resort but in the injectable form.

Talk to him about oxygen. Read the link on the left. Started at the first hint of a headache, using a non re breather or "cluster" mask, many of us can abort a headache in less then 10 minutes. Almost no side effects. Definitely worth a try. Verapamil is a great preventative for many, it didn't work for me so I use lithium.

You have lots of reading to do, print out some of the links, especially the one on oxygen and take them to your doctor, get ready to do some educating! Welcome to the board, I hope you find some relief soon!

Guiseppi

Title: Re: New guy
Post by ClusterChuck on Apr 4^th, 2007, 3:45pm

OXYGEN ...

Guiseppi is strange .. but we tolerate him ... ;) ... But I have to agree with him!!! OXYGEN !!!

Welcome to the loony bin!!! (Except me .. I am the only safe, sane, shy, prim and proper one here)

By the way, did I mention OXYGEN ??

Chuck

Title: Re: New guy
Post by Rosybabe on Apr 4^th, 2007, 8:00pm

Hi Wolf!

the guys are right, ask your DR for O2 and I will suggest tp stop using so much advil, it will not work for the pain and will only destroy your liver and stomach.

Welcome aboard!!

Title: Re: New guy
Post by pieface_49 on Apr 4^th, 2007, 9:38pm

Hello Wolf, welcome. Have been diagnosed myself for over 4 years with Trigeminal Neuralgia. It sucks when the Docs have no idea what is wrong with you? Have taken all the wrong meds and have suffered because of it. The abortives we hear about will let you know if you have CH. Don't know what the length of your episodes are, many say oxygen (O2) is the ultimate abortive. Chuck forgot to mention it :) Red Bull, Melatonin, imitrex (sumatriptan) http://en.wikipedia.org/wiki/Sumatriptan and I hear some say benadryl helps with what we call "hits". Who was so kind to name them "hits"? I guess that is politically correct?

My name is Donnie, nice to meet you. Am a newbie myself.

Title: Re: New guy
Post by Callico on Apr 8^th, 2007, 12:03am

Welcome aboard!

I concur with the "prescription" for oxygen. It is safe w/no side effects and is relatively inexpensive. I have to agree with Guiseppi about the pills. they are much to slow to do you any good. Unless you have abnormal attacks they will be over before the meds have time to take effect, and they don't work as a preventative for ne next attack.

Red Bull has been effective for me also as an abortive if I slam one down, prefferably in one straight chug. It will knock out a mid level attack in about 8-10 minutes. Any of the other energy drinks with taurene will work as well. The combination of cafeine and taurene seems to be what make it work.

Verap can be a good preventative, but it takes a while for it to build up in your system. I had to work my way up to 960mg/day before it did anything, and then I ended up adding Lithium to it to get real relief. it worked for about a year before becoming ineffective for me, but many don't have that happen. You will have to work with your doc to develope a regimen that works for you, and then be adaptable to change as the beast seems to morph over time.

ther is a lot of great info available here. It will take you some time to read it and develope a game plan for your treatment. Feel free to ask questions. there are some very knowledgeable people here who will be happy to help you. the most important thing is for you to educate yourself and then be proactive about your treatment. Con't just sit back and wait for your Dr to decide what to try as most docs never meet a clusterhead and therefore have no clue what to do with one. You will have to work with him to help educate him on the best way to deal with your situation.

All th best,
Jerry

Title: Re: New guy
Post by wolf29 on Apr 8^th, 2007, 12:29am

I thank everyone for all the information here...I have done a lot of looking around on here and read alot about the Red Bull and tried that and it really helped one night...Thank you...Also I have been having them for about 4 weeks now....all I had was samples of Imitrex to try..well they seemed to help, I took everyones advice and got the injectable kind...I think it must have scared it away cuz as soon as I got the prescription...i've only had a few shadows....nothin major! So I'm gonna wait and see what happens from here and talk to my doc from there...he is a good doc and willing to try anything, he has heard of these but never treated anyone with one b4 but is willing to try anything i suggest as long as it is legitimate, I have brought many things from this website into him...he too has learned alot just from here...I thank you all and I wish you all pain free days ahead!!

wolf

Title: Re: New guy
Post by Callico on Apr 8^th, 2007, 12:44am

finding a dr that is willing to learn with you and is willing to try things you suggest is one you will want to hang on to. I wish all drs would do that, but many seem to have a God complex.

Just my jaded opinion.

Jerry

Title: Re: New guy
Post by Guiseppi on Apr 8^th, 2007, 1:08am

A huge I agree with Calico!!! A doctor that lsitens to you is worth their weight in gold! And you're doing a huge service to everyone by educating another doctor! Good job! ;;D

Guiseppi

Title: Re: New guy
Post by BarbaraD on Apr 11^th, 2007, 11:20am

Sounds like a doc worth keeping. O2 is a great start and Imitrex works for most here. (I use Cafergot myself - ergotomine.)

Red Bull is always with me and melatonin at night.

Verap has worked for so many here.

The main thing is finding what works for you. We're all different and react differently to different meds.

A predisone taper will usually give you time to get the verap in your system so it can work.

Hope you're PF really soon and stay that way for a long long time.

Hugs BD

Title: Re: New guy
Post by Yorky on Apr 11^th, 2007, 5:57pm

on 04/04/07 at 14:36:55, wolf29 wrote:

you will put the beast back in is cage....people are always here to help/advize

welcome.......ps 10 yrs misdiagnosed for me.

read learn, then read and learn some more . ;)

Title: Re: New guy
Post by chrisw on Apr 13^th, 2007, 1:59pm

thats great that your dr wants to learn more about your condition. I have never met a dr like that. usually they think they know all there is to know, and anything you suggest must be foolish, since it didnt come out of their mouths. Sorry, I have a bad reaction to drs. (can you tell?)

Some more advice is to keep refilling your trex injections, even if your ha's go away. Get a nice stockpile ready in case you need them next time. It is horrible when you are in the middle of a cycle, and you run out of trex, and your insurance co wont let you get any more.

good luck, and many good wishes,
chrisw