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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> New guy
        
(Message started by: slashroot on May 7^th, 2006, 10:03am)

Title: New guy
Post by slashroot on May 7^th, 2006, 10:03am

Hi, I'm slashroot (it's a linux thing). I've been suffering from cluster headaches for about 5 years. I've just started to recover from a good 3 day one so I'm sorry if I'm being to brief or not making much sense. It feels good to know I'm not alone. I have some things that have helped me in the past and will post them under the appropriate subject.

Title: Re: New guy
Post by Guiseppi on May 7^th, 2006, 10:06am

Welcome to the board slash. Please do let us know what's working for you, it's how we all learn. Sorry to hear about the three day run, that'll take the starch outta your sails huh? Take care and wishing you a little pain free recovery time.

Guiseppi

Title: Re: New guy
Post by Guiseppi on May 7^th, 2006, 10:30am

One more thing slash, I want to phrase this delicately so the sharks don't turn on ME! Because you used the phrase a three day headache a bunch of the pharisees.....those dedicated high priests schooled in the CH law......will post some really strong worded posts accusing you of blasphemy, not having clusters, vile crimes against innocent children and the wanton and willful removal of the tags from your mattresses. Believe it or not they mean well but have been just a tad abbrasive of late. Take what is useful from their posts, ignore the abrasive! I've seen a few people chased away by these posts. There is too much good info here to be chased away from and no one should have to suffer these damned things without help. Pain free days to you.

Guiseppi

Title: Re: New guy
Post by chewy on May 7^th, 2006, 10:34am

On the other hand Guiseppi's comments will start the flames more than your post would. He'll make tons of friends like that.

Was your 3 day headache constant or was it an up and down kind of thing ?

Title: Re: New guy
Post by slashroot on May 7^th, 2006, 11:05am

It was wake up at 2:00am and pacing around the house while trying to physicaly squeeze the pain away,placing ice packs on my left temple, laying down in the shower with the water as hot as I could get it and praying that I wouldn't have to wake my wife and scare my children with what has to look like Daddy's going crazy followed by brief periods of relief where the pain is replaced with shear terror that it may (will) return. I'm in one of those hoping it doesn't come back today periods now. This is the fourth day of this and today I woke at a normal time with no pain but with a feeling that can only be described as "shell shock".
If this does not qualify me as someone who belongs here, then have one of the mods to delete my account. I don't have the time or energy to have flame wars with Holyer Than Thows.

Title: Re: New guy
Post by chewy on May 7^th, 2006, 11:34am

Quote:

I don't have the time or energy to have flame wars with Holyer Than Thows.

No one does. Some people just make stupid remarks that start that shit.

Are you using an abortive?

Have you tried melatonin at night?

Title: Re: New guy
Post by slashroot on May 7^th, 2006, 11:52am

Currently I'm taking Zomig nasal spray when the pain starts but I've tried many different medications including some kind of shots to the base of my skull. My doctor is certain that they are cluster headaches but I feel like all the medications are just trial and error. In fact you guys seem to have more knowledge than my doctor. I would like to print out some of the information I've found here to show him. Would that be O.K.?

Title: Re: New guy
Post by chewy on May 7^th, 2006, 12:05pm

Not only OK but advisable!

I've been episodic for 30 years. Heres what I have found will manage my CH when in cycle.

480 mg of verapamil per day
Ten days after starting the verap I do a prednisone taper. That will usually break my cycle.
I stay on the verap until I've had 10 pain free days days, that doesn't include PF days while on the pred.

Imitrex injections to abort and 9mg of melatonin to help with sleep.

A lot of people have good luck aborting with oxygen. A good, safe, and cheap way to abort.

Title: Re: New guy
Post by Charlie on May 7^th, 2006, 12:56pm

Welcome to the madhouse Slash.

Lots of good advice here and lots of people that have to deal with this horror every effen day. You sound as though you are on the right track. What follows is what worked for me most of the time:

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: New guy
Post by chewy on May 7^th, 2006, 1:02pm

Listen to Charlie. He knows what he speaks.

He also dresses in women's cloths but we overlook that.

Title: Re: New guy
Post by Redd715 on May 7^th, 2006, 4:56pm

Welcome slashroot,

I've been Chronic for 22+ years( only correctly diagnosed for 2), and during the 12 or so years prior to Dx I would have 3-4 days of attacks then 3-5 PF then back at it again for 3-4 days etc. Two years ago the Beast as we call it morphed and I found this place.

Could you please tell us something about how many pain free days/weeks/months between bouts of attacks? Certain Medications are thought to be more effective depending on how long a remission period you get. There was a Doc at the convention in Nashville that spoke of prognosis rates depending how the earlier years of symptoms manifested. It was quite interesting to hear, as it was my first formal intoduction to the science behind all the research going on in the world.

Chewy is correct...very advisable to print out any and all information you think will be helpful. We are not Doctors, but we cumulatively have just as much if not more understanding of this condition. Guisseppi was trying to forwarn you about a few malcontents, and his intentions were good. What the heart of that issue is, is that some folks come here with a lable of CH from uninformed Doctors, when what they really have is a different headache form. Meds for CH can be very dangerous and sometimes life threatening even for ourselves. Many other primary headache conditions are much more easily treated and if that appears to be what the case is, we want to steer a newbie in the right direction for proper treatment and relief from their pain.

Ask all the questions you need to.

Pegg

Title: Re: New guy
Post by Jasmyn on May 8^th, 2006, 1:22am

Welcome Slash and what that Chewy guy said, is the meds regime for most of us that suffer the cyclic thing.

There is an "Imitrex tip" on the left that can be very useful. Lithium is also an option.

No, you'll never be alone with this again, so stick around.

btw: Charlie is not only wise, he's also pretty ;;D

Title: Re: New guy
Post by Beastfodder on May 10^th, 2006, 10:27am

Slashroot

Hi sorry it's gone pear shaped at the moment. Huge empathy with the hot water remedy, hiding from the family...

Hopefully you'll have got the idea by now that this place will help. For me as a 40 odd year old bloke who's had CH for nearly 10 years standing here's my tips.

O2 is a great abortive with a non-rebreather, which apart from the fire risk is as safe as meds for CH gets, in terms of no side effects.

From the pharmacueticals I've been prescribed like Maxalt and pizotifen side effects like weight gain, lack of energy etc could also impact quality of life.

What has worked for the last two cycles is www.clusterbusters.com - aborting one cycle mid way through and last time with about 4 headaches opposed to 50 plus all but aborted the whole damn thing.

Also a quick salute to Charlie's methods - ideal if you're without meds and it does work.

Kind of trial and error got me there - do the reading and finger's crossed that you will too, you won't go short of support.

Andrew

Title: Re: New guy
Post by RichardN on May 10^th, 2006, 4:25pm

OXYGEN!!!!!

Works for 60-70% of us to abort. I can kill the beast in minutes if used early-on in the attack. Night hits take longer. Read up on and definitely take the o2 info to your doc. Requires proper regulator (15 lpm) and non-rebreather mask (the one with the bag) or clustermask.

Be Safe, PFDANs

Richard

Title: Re: New guy
Post by Melissa on May 11^th, 2006, 10:14am

Hello slashroot!

I ditto the O2, and also urge you to check out non-prescription treatments also on the meds section of the board.

I myself, survived my last cycle with using Kudzu as a preventative and O2 as an abortive. (my cycle lasted 40 days)

Good luck and welcome home!

:)mel

(btw, Charlie looks cute in a halter top ;))

Title: Re: New guy
Post by Kirk on May 13^th, 2006, 4:03pm

Root huh. If at all possible try to get O2. I've had CH since May of 69. And the one thing that has worked most consistantly is O2. I won't bore you with the list of meds. I've been on.

Which Distro? [smiley=smokin.gif]

Using Fedora Core 5 these days myself.

Title: Re: New guy
Post by purpleydog on May 13^th, 2006, 4:16pm

Hello Root (oops, I better watch it, or Root will get me for that!)

Welcome to the board, Yer in the right place. Read, read, read... and learn. Most of us know way more than our docs. I'm lucky in the fact that my neuro listens to me, and has let me try stuff that he hasn't heard about for treatment of CH. I told him of Zyprexa to abort a hit a few months ago, and decided to try it recently, and he had no problem with it.

O2 works for many, but you have to hit it at the first sign in order for it to be effective. I use trex injections broken down into 1/3rd shots.

FC5 for me too. What's yours?

[smiley=smokin.gif]

(it's a linux thing ;)...)

Title: Re: New guy
Post by Root on May 13^th, 2006, 4:35pm

Hi Slashroot:
Read up on the left and print out everything you can think of for your Doc. Nothing beats documetation [smiley=laugh.gif]
The people on this site are a bit wierd sometimes, but you can't beat the knowledge base.
Because of a heart condition I can't use the Triptans. So for me its Topiramate for a preventive and O2 to abort. I use Olanzapine to abort if I'm caught without my O2.

I hope things improve for ya.

TTFN

[smiley=smokin.gif]

Title: Re: New guy
Post by Opus on May 13^th, 2006, 5:09pm

Hey Slashroot,

The only thing I can add is drink coffee, lots of it, sleep sitting up, a recliner or lots of pillows and keep your stress level up. I have found that trying to fix problems with Microsoft windows helps my head a lot ;;D

I have been using Ubuntu since Warty, and have been using openmosix with Debian Sarge for a server.

Someday we have to get our "Linux cluster fsck" shirts made.

Opus/Paul [smiley=smokin.gif]

Edited to add the smoking smilie, can't believe I forgot it.