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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Wanted to Introduce Myself
        
(Message started by: JJH on Sep 4^th, 2007, 8:53pm)

Title: Wanted to Introduce Myself
Post by JJH on Sep 4^th, 2007, 8:53pm

Whatsup everyone!

My name is John, I am 26 yrs old and I am a chronic cluster headache sufferer.
I never thought I would be on the internet one day talking about these headaches but here I am.

I wrote two other posts a couple days ago and ended up deleting them. went back to see if they were still there and I guess a couple people think im a troll, whatever that is.

Sorry no trolls here!

Anyways, just wanted to introduce myself and say HI!

Title: Re: Wanted to Introduce Myself
Post by Ray on Sep 4^th, 2007, 9:03pm

Hello John:

A troll is a person who comes into message boards stirring up trouble for fun.

Sometimes when they write here, their note is deleted and the responses stay. When Dave wondered what happened to your note, I suggested that perhaps, you were a troll. This was just a guess, as I never read anything you wrote.

Now that the above is out of the way, Welcome to our family on the web. Read, learn, ask questions. We'll do our best to help.

With Pain Free wishes,

Ray

Title: Re: Wanted to Introduce Myself
Post by Guiseppi on Sep 4^th, 2007, 9:07pm

Welcome to the board, when you get a chance tell us a little about your treatment program. What has and hasn't worked, the different meds, combos etc. What makes this board so special is the sheer amount of experience, tens of thousands of years of CH suffering!!! We'll tell you what has and hasn't worked for us, maybe make some suggestions you haven't tried, maybe you can teach me something. Either way I hope you're finding some degree of relief Welcome to your new second home!!!

Guiseppi

Title: Re: Wanted to Introduce Myself
Post by Charlie on Sep 4^th, 2007, 9:16pm

Welcome aboard and sorry you have to deal with this horror. You'll find a lot of good stuff here. Let us hear more from you. Meanwhile, here is a technique that worked for me:

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. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. 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. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.
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.

I used to try to imagine I was pushing blood away from my neck 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: Wanted to Introduce Myself
Post by JJH on Sep 4^th, 2007, 9:56pm

Thanks for responding,

For seven years, I have been taking verapamil non-stop.
I hate taking a heart pill when there is nothing wrong with my heart it cant be good. I am in the process of stoping. I get around ten clusters a week, no breaks, I might get luckly and go a week without any, but that is rare. I get these headaches, year round and see no point in taking the verapmil anymore.
I use imitrex 20 mg nasal spray but I lost my insurance so I no longer can afford them. So I use a bag of frozen peas

I really want to try oxygen and never have to take another prevenative medicine again. These doctors are giving us these pills, they dont care if we develop serious side effects later in life. were just another chart.

Title: Re: Wanted to Introduce Myself
Post by MR_FLOOR on Sep 4^th, 2007, 9:58pm

Whats up John,

I knew you weren't a troll, how ya doing bud.Now you are an official member of the family.

Dave

Title: Re: Wanted to Introduce Myself
Post by JJH on Sep 4^th, 2007, 10:06pm

Hey Dave! Ya im doin good. whats going on with you?

Title: Re: Wanted to Introduce Myself
Post by Guiseppi on Sep 4^th, 2007, 10:09pm

Oxygen is a great abortive for me but I don't fly it solo. I'm episodic so unlike you I catch several months of breaks between my cycles. On cycle I use 1200 mg a day of lithium. A drug, but for me it has very little side effects. The lithium will block 80-90% of my headaches with the oxygen and occasional imitrex jab for the remainder.

Several chronics have posted success stories with lithium substantially reducing the frequency and intensity of their attacks, might be worth a shot. The upside is it is relatively inexpensive.

Guiseppi

Title: Re: Wanted to Introduce Myself
Post by Batch on Sep 4^th, 2007, 10:15pm

Hey there,

You've come to the right place. Lots of good help and experience here. I'm Pete Batcheller a.k.a. Batch and I'm your friendly O2 Pusher. If you've not already done so, make an appointment with your doc and ask for an Rx for medical O2. Make sure you ask for 7-15 liters/minute flow rate, and if that's not a problem with the doc, ask for a 15-25 liter/minute Rx.

You'll find a Supplemental User's Guide on the OUCH website in yellow on the left or go to the following URL:

http://www.ouch-us.org/medications/oxygen/o2info.shtml

and drill down in the "O2 Information" link in green.

There's also a questions and feedback link that you can use to contact me. If you do, I'll send you the latest version of the High Flow Rate O2 Therapy paper and procedures to abort cluster headaches.

Take care and be assured that you are among the best friends and supporters you've ever met.

V/R, Batch

Title: Re: Wanted to Introduce Myself
Post by JJH on Sep 4^th, 2007, 10:20pm

Thanks for the advise everyone.
I am really glad I found this site and all of you.

Title: Re: Wanted to Introduce Myself
Post by Lotus on Sep 5^th, 2007, 12:34am

Hi and welcome

Please be careful about stopping Verapamil suddenly if you have taken it non stop for the last 7 years.

Please talk to your doctor about it.

You never know, it may have helped reducing the frequency and intensity of the attacks as well as keeping your blood pressure at a good level.

Verapamil is not really a heart pill, its more a blood pressure pill.

Also most people do need some preventive meds for CH. Using abortive alone may not be enough.

Take care and painfree wishes to you.

Annette

Title: Re: Wanted to Introduce Myself
Post by michael on Sep 5^th, 2007, 5:09am

[quote /tens of thousands of years of CH suffering!!!/quote]

How did you guess my age?