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        New Message Board Archives >> 2004 Posts >> MAN THIS STUFF HURTS
        
(Message started by: FISHBAIT on Apr 29^th, 2004, 4:58pm)

Title: MAN THIS STUFF HURTS
Post by FISHBAIT on Apr 29^th, 2004, 4:58pm

not sure where or how i should post but here it goes. i was just diagnosed today. mine are rt side, 830 pm at night i have had 3. 50 minutes long. im trying to nip this thing in the bud before it gets cranked up. my doctor gave me cortisone shot, i will be taking 2 dexamethasone tablets per day for 2 weeks, i have imitrex spray[as back up i also got migranal if the imitrex winds up not working after i have used them up. i have sent emails to all i know of what im going through as most i dont think have any idea. most all my friends are my age 46 and doubt any of us wanna go thru this kind of pain. as far as my treatment initially, does anyone have any insight? am i doing the right thing? thanks im still learning how to use this message board----when you guys say "abort/abortive" do you mean to stop the pain while you are in the throws of it? man! you guys are super!!!!!! WHAT A HELP YOU ARE KEEP TALKIN TO ME PLEASE.!!!! im learnin , slowly but surely! THANK YOU SO MUCH!!!!! its 810pm, im sittin here wondering when its comin, lil skiddish about leaving,

Title: Re: MAN THIS STUFF HURTS
Post by thomas on Apr 29^th, 2004, 5:01pm

Stay away from the painkillers if you can find something else that works to abort the headache, ask your doc about O2, get an appt with a nuero. And read all you can here.

Title: Re: MAN THIS STUFF HURTS
Post by Gator on Apr 29^th, 2004, 5:31pm

We haven't met. Sorry you have to be here, but welcome aboard! This is the best place in the world to find information about clusters and support from people who actually know what they are.

Ditto what Thomas said. Painkillers can just lead to more headaches in the form of rebound pain. As far as treatment, everyone is different. What works for one won't necessarily work for another. Between my GP, a neurologist and a "headache specialist" aka another more experienced neurologist, I've yet to figure out what works for me preventative-wise. O² and Zomig Nasal Spray works as an abortive for me.

Read everything you can on this site and the OUCH site and make notes of questions for your neuro. S/He should also do an MRI to rule out some physical problem.

Gator
41 y/o, wm w/ch seeks MD that knows what the f$%k he's talking about in the OKC/Tulsa Area!

Title: Re: MAN THIS STUFF HURTS
Post by Tiannia on Apr 29^th, 2004, 6:01pm

Hey there, Welcome to Clusterville.... You are not alone. We all understand and either have been there or are currently in the throws of it ourselves. Talk to you doc about other preventatives. Get an appointment with a neuro as soon as you can and preferably one that specialises in HA. Throuw a journal together so when you go to see him you can show him how you have been getting hit and the time frames. At this point you are not getting hit that frequesntly so try to get a cocktail that works before the beast moves in permenantly for a while. A lot of people have had luck with Veraprimil and Lithium together as a combo. Like many have said talk to them about O2 as well. Although O2 seems to be harder to get then solid gold. Read as much as you can. There are a lot of treatments out there and some work for some and dont for others so there is a lot of trial and error until you find what does work for you. Read and ask questions there are so many people here who have been through everything you can imagine.

Do your best to stay away from the narcotics. While some do find that they do work for them, that should be a last resort if nothing else will work as a preventative just simply because of the rebound HA factor. Also, many are very addictive and you dont want to jump out of the frying pan to end up on the spit.

I hope that you find relief.

PF Wishes to you,
-Tia

Title: Re: MAN THIS STUFF HURTS
Post by carmela on Apr 29^th, 2004, 9:59pm

Hi, I'm new here too. I have had the headaches for ten years now. What seems to work today might not work the next time. None of the medications ever worked for me. I just put my head in front of the air conditioner and try to freeze my head.Sometimes it works. I hope you find something that works for you. Keep trying. It made me feel better when I found this site, just knowing that I am not alone.
Welcome
Carmela

Title: Re: MAN THIS STUFF HURTS
Post by JDH on Apr 29^th, 2004, 11:19pm

You're damned right this stuff hurts!
Hi Fishbait, like the others have said, try and get hooked up with some o2. It's killed many h/a's for many people here. Check out this link
http://www.headachesupportgroups.com/oxygen/oxygen.htm
good luck and hope you can get some relief.

Jim

Title: Re: MAN THIS STUFF HURTS
Post by Patrick_A on Apr 29^th, 2004, 11:56pm

Ok, 1st line of attack is to get a Neuro appointment. Go to the OUCH site for a list of good Neuros in your area.
Describe your pain to your Neuro. If in fact he says you have CH's, then ask him for an Oxygen prescription. That is probably the cleanest possible way to abort a CH. Clean is good, Drugs have side effects.
Then i would ask for some combination of the CH stoppers listed at this web site. My personal CH stopper was a 60mg taper of Prednisone, and 240mgs of Verapamil a day. That stopped my CH's in about 3 weeks. I have now been painfree for 8 months. There are many combos that work for different people. I was lucky to find it on the 1st try!

Good luck, We are here if you need us, Patrick

Title: Re: MAN THIS STUFF HURTS
Post by fubar on Apr 30^th, 2004, 12:56am

fishbait,

Welcome aboard. You are fortunate to have found this resource so early in your battle with this bastard. Please forgive us in advance if our 'advice' comes across in the wrong way, as this place is not for the weak-stomached. I think we all tend to assume that the average clusterhead is tougher and has thicker skin than the average human. It's generally the case. The only reasons I'm bringing this up are you don't have the usual years of battling pain behind you *and* you touched on a topic that sends up flares pretty often

The use of narcotics to control cluster headache pain is controversial, to say the least. In any case, they are dangerous for anybody to use on a regular basis. For a lot of us (myself included) narcotics have no effect at all on cluster pain. There is also a lot of addiction and health issues that tend to go along with regular pain killer usage. All that said, there are probably a lot of clusterheads who take them at some point. We experience an ungodly amount of pain, I guess we should experience the ‘pain killers’ (ha!) too. To each his own. However, anytime you mention it you will almost surely see an avalanche of concerned posts. Don’t take it the wrong way. Many of us have seen the destruction of addiction and are compelled to say something.

‘Abortive’ is something you take when/if symptoms are there. It is an attempt to stop the headache or the process of the headache. In other words, ‘abortive’ does not just mean pain killer, it means trying to get rid of the reason for the pain. One of the most incredible abortives happens to be, believe it or not, pure Oxygen. You have to breath loads of it, usually more than a standard Oxygen regulator will deliver, so we use high-flow regulators and a full face mask instead of the standard canula (nose thing). You can get all the information on it by going to the Oxygen link on the side. Imitrex is an abortive of choice as well, but it is so expensive and hard to get enough on any insurance plan if you have a lot of headaches. It is amazing how well it works though.

There are different preventative methods and I encourage you to read and read and read. The education can save your life. Do not assume your doctor will know everything (or anything). You should be able to bring him information and talk to him about it. They really aren’t usually all that familiar with CH.

-Fu

Title: Re: MAN THIS STUFF HURTS
Post by Charlie on Apr 30^th, 2004, 5:11am

Welcome aboard Fish and you will find good ideas and ways to deal with this horror. I agree that OTC drugs are completely useless. Narcotics, I have no idea but in any case use your headl.....hmm.

Try some very vigorous exercise when getting hit. It can help. Here is a link to a technique that worked for me:

http://www.netsync.net/~charlies/

Let us know how you are doing.

Charlie

Title: Re: MAN THIS STUFF HURTS
Post by Little Deb on Apr 30^th, 2004, 7:58am

Welcome FISHBAIT!

reminds me of JOE CARTOON...Little Deb [smiley=crackup.gif]

Title: Re: MAN THIS STUFF HURTS
Post by Gena on Apr 30^th, 2004, 10:07am

on 04/30/04 at 07:58:14, Little Deb wrote:

Welcome FISHBAIT!

reminds me of JOE CARTOON...Little Deb [smiley=crackup.gif]

Welcome Fishbait........

PS. I love Joe Cartoon

Title: Re: MAN THIS STUFF HURTS
Post by Sean_C on Apr 30^th, 2004, 4:26pm

Fishbait I'm with the others, painkillers arn't the answer for CH. Do some research on the board and hopefully you can get those Ch's under control.

PFDAN to you

Sean

Title: Re: MAN THIS STUFF HURTS
Post by echo on Apr 30^th, 2004, 4:48pm

Welcome to the MB Fishbait. Glad you were able to find us so quickly. Sorry that you needed to search a site such as this out.

Title: Re: MAN THIS STUFF HURTS
Post by cootie on Apr 30^th, 2004, 10:24pm

Hi FISHBAIT......also hi to carmela also. Yeah I don't know of too many cases where narcotics help CH attacks......some can cause rebound ha's too...oh whoopie jus what ya need ech ? What part does cortizone play......doesn't it stop your body from reacting to injury ect like in a joint whatever so it can heal without your body inflameing the area ect ect. Jus wonder'd.....maybe I missed somethin along the line. Good luck in findin your mix that works.......hope ya find it soon. Pain palace Pam

Title: Re: MAN THIS STUFF HURTS
Post by mynm156 on May 2^nd, 2004, 5:58pm

Man Wish you didnt have to be here but welcome aboard!

You will find that there are a many many treatments out there that help some and not others. You are gonna have to find what works for you. I use Imitrex injections and Stadol ( I am one of the very very FEW that get some relief from this pain killer however, it knocks me out and is just about as hard to function after using it as it was with a CH)

Keep on your Doctor about it and DONT be afriad to ask them about the treatments you will learn about on here!!!

Good Luck

MYNM156