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        New Message Board Archives >> 2007 General Board Posts >> Back again!
        
(Message started by: jimp63 on Apr 17^th, 2007, 3:54pm)

Title: Back again!
Post by jimp63 on Apr 17^th, 2007, 3:54pm

Hi,

I had a hell of a time remembering my log-in info!!! I've been back on cycle for almost two months now. Two 15 day courses of Prednisone, the second one piggybacked with 80mg Inderal twice a day. I have one thing to say...WHEN IS IT GOING TO STOP!!!!!!! Usually I get relief from Prednisone alone, not this time though. I hate taking meds, makes me feel weak, especially when there are no favorable results. I feel like a pin cushion with all the Imitrex I've been using. I don't know about anybody else out there...but the CH pain seems to be getting worse as I age. I was reduced (again) to a sobbing, slobbering, drooling mess in my wife's arms recently (God love her!) the pain was that intense. The thought of crossing over from episodic to chronic actually sends chills down my spine! Is that an experience anyone in here has lived through, I'd really like to know. I really appreciate anyone responding to this and letting me know if your pain has worsened with age. I also have a call in to my doc to see what my options are since the Pred/Inderal combo let me down. What meds have worked for you guys? Give me a heads up on any combinations you may have had luck with in terms of breaking a cycle. I'l be checking back. Thank you for being there, I really needed to vent.

Title: Re: Back again!
Post by seasonalboomer on Apr 17^th, 2007, 4:06pm

on 04/17/07 at 15:54:29, jimp63 wrote:

Hey Jimp,

Sorry to hear you're having a bad time. I don't know if the pain gets worse with age or my tolerance for the pain gets weaker. All I know is that I can't just gut it out anymore. If there's an Imitrex injection in the building or an O2 Tank in the house, I can't handle the idea of not using it. So, I do.

Good luck and hoping your cycle breaks for you.

Scott

Title: Re: Back again!
Post by Mac_Muz on Apr 17^th, 2007, 4:14pm

hey we got another winner! Ain't you lucky now :(

sorry to hear of it really, but you know how it is... to remain string you bucck it up, fall on the floor, in yer wife's lovin arms in you case i guess and creep out her blouse with gook...

I hate the meds too and didn't use any this time.. The thinking was why give it anything, and just take it. Somehow getting pissed off helps me... No one ever said i was too smart, and or getting pissed off works, but I just hate the idea of giving in..

Once i was a drug addict and thats about the only thing in life i ever succeeded in quiting.

Good luck and maybe you 'season" is nearly up...

Title: Re: Back again!
Post by Gator on Apr 17^th, 2007, 4:15pm

Welcome back. Sucks that you have to be back, but at least you know people here understand and will do what we can to help get you the information you need to fight this thing.

Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.

http://www.brightok.net/~mnjday/chtherapy.pdf

Here is a link to some non-prescription alternatives different people have used to help with the pain:

http://www.ouch-us.org/chgeneral/nonmed.htm

If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:

http://www.drugdigest.org/DD/Home/AllAboutDrugs

Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.

If you need assistance is getting your meds, the Partnership for Prescription Assistance website has links to hundreds of programs to help people get the meds they need. Check them out here:

https://www.pparx.org/Intro.php

Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. It must be used correctly to work, though. Get it prescribed for up to 15 lpm through a non-rebreathing mask for no more than 20 minutes. If your doc won't prescribe it for you, and there is no medical reason why you can't use it, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here are some links that tell about using O2:

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

http://www.headaches.org/consumer/topicsheets/oxygen.html

http://www.chhelp.org/mhni.html

Here is a link to a letter that may help explain things to your friends, family and co-workers.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Gator

Title: Re: Back again!
Post by Rosybabe on Apr 17^th, 2007, 4:51pm

I am sorry to hear you are having the beast back at home.. :-[

do not let it win, do what you can to fight...

Best wishes for you to find a break soon :)

Title: Re: Back again!
Post by sldrswyfe on Apr 17^th, 2007, 5:24pm

My heart goes out to you...it is so hard...so painful.

I cant help you with crossing over..but I have been chronic for thirteen, nearly fourteen years now.

I still laugh. I still get mad. I still have fun. I still have to clean the house. I still have to pay the bills. And the sun still comes up every single day.

What Im trying to say is life does still go on. I even managed to fall in love and get married six years into being chronic. My husband doesnt have CH's...but sure knows a hell of alot about them now. He doesnt treat me as if I have them...I don't even think it registers...completely..but it aint' so bad.

Right now, you're going through a rough spot. Dont scare yourself silly on top of it. I agree about the pain getting worse (I don't know if it could peak any higher really)...it's more the tolerance for it...Im not speaking for you...only you know and I trust what you're saying.

Just make sure you have what you need to manage it. Whatever that is. And breaking down is completely normal...two days ago I was crying, begging and pleading...but remaining calm also helps. Not always easy. Try to get a grip when it's slipping. And do not scare yourself any more. One day at a time. When AND IF you became chronic...you'd deal with it..you would.

Now feel better and breathe.

Title: Re: Back again!
Post by ClusterChuck on Apr 17^th, 2007, 6:10pm

It is impossible to answer your good questions fully. The beast does different things for different people. Some have "grown out of them" and others haven't. I was told, once I hit 50, I would stop having them. Well, I am in my late 50's, and they are still here.

Do they get worse, as you get older? Sometimes. Sometimes not. No one can predict what is going to happen to you.

For myself, I have had these for 28 years. The last 8 have been chronic. The last three years have been hell. The last four months have been the worst I have ever been, with up to 20 hits a day. I have been unable to work, or do much of anything, in the past four months. At this time, I am not responding to any preventative medications. BUT, I am convinced that I will find my silver bullet!

Don't let the beast win!

Many times when people ask how I am, I will respond with "MAHHHHVELOUS!!" and "Life is WONDERFUL!" Why? because when they ask, I am between hits, and life IS wonderful!

What I am trying to say, is, regardless of what path the beast takes with you, do not dwell on the hits. Dwell on, and thoroughly enjoy the painfree time between hits. It is hard to do, but with that attitude, the beast will never win, regardless how often and viscious he hits you.

Hang in there, brother, we are here for you when you need us!

Chuck

Title: Re: Back again!
Post by ClusterChuck on Apr 17^th, 2007, 6:11pm

Geeze!! What a long winded, mouthy ba$tard I am!!!

Title: Re: Back again!
Post by Jonny on Apr 17^th, 2007, 6:11pm

Why did you leave?

Title: Re: Back again!
Post by Charlie on Apr 18^th, 2007, 1:14am

Sounds........not effen good. You might try this:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie

Title: Re: Back again!
Post by Yorky on Apr 18^th, 2007, 3:12am

i hope things are improving ..jimp

me,you,tarann,charlott.....all getting the beasts..attention

kick it back....