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        New Message Board Archives >> 2006 General Board Posts >> Newbie...sort of
        
(Message started by: hellavalife on Oct 24^th, 2006, 3:09am)

Title: Newbie...sort of
Post by hellavalife on Oct 24^th, 2006, 3:09am

Well Im back, I last was here 8-2001. After thinking I was dying a dozen times I went to a doctor who sent me to a Neuro who then told me I have "Cluster Headaches". I was like "what the hell is that?"

I then went on the internet and found this website 5 years ago.

They stopped after a month or two and I didnt look back. I thought I was one of those lucky people who never get them again. I never forgot them though and anytime someone I knew had a headache and told me "oh man this headache is killing me" I would just laugh and think "he doesnt know a Head-ache" but I never thought I would have to google this site again.

So here I am. I even had to re-register, so I fell like a newbie but with experiance.

They started two Fridays ago. That first day wasnt bad and I didnt even think they were back but Saturday was a different story. I got 3 and then 4 on Sunday. The week didnt get much better averaging 3 a day. Last Monday afternoon I think I got the worst one yet. I got a couple overnight which I usually dont or didnt get but almost clockwork on my 1pm and my 5pm then its a 30% chance I get one around 5am. Maybe my biological clock is different than most since I work 3pm to midnight and then usually fall asleep around 3am. (Hey its almost bedtime)

I like to drink beer and Im on my 5th right now I dont think it helps but I get them (CH) regardless so I said what the hell. I havent been to the doctor this time because I think he cant do nothing for me. I might be wrong on that last opinion but I guess I just have to put my time in and hope for some PF time afterwards.

Im having some serious shadows right now but I have had shadows all day today which is something new. I usually get them (CH) and once they are gone I dont get many shadows so today marks a new symptom. These things seem to evolve and morph.

I guess I need to go to the doc. I will try and go on Wed.

Well Im ramblin (no its not the beer talking) I have been meaning to put something down since these things returned.

They couldnt have come at a worse time too.

Well thats it for now thanks to all for keeping this site up. Its unreal the amount of people who you think are smart people and then you try to explain this and they are like...Oh yeah I had something like that...right after you explain to them this is not "one of those" this is different. I tried the letter and even getting them to view this site but they dont get it. That is an aspect of this condition that is very frustrating.

Pain is such a personal thing. Its just too hard to gauge pain mostly because different people can take more and some less. Im a rare breed with these CHs. I tend to become invisible, If Im home I come up to a room and just stand or sit still, I wont even move. Its different if Im at work. Its too hard to hide because I work on a counter helping customers. I usually work through it but almost all my customers can tell when Im being violated by one of these attacks.

I hate these things.

Ok I said it before and Im saying it again...Im ramblin.
A good night to all and many PF days to all.

H

Title: Re: Newbie...sort of
Post by Barry_T_Coles on Oct 24^th, 2006, 3:25am

Hi H
Sad you’re getting hit again but if you’ve been here before you know you will get all the support you need.
Let us know what you are using to abort if any, what meds you are using.
Beer is a killer for me; any alcohol at all is a killer for others.
Ramble all you want, that’s one of the reasons we are here is to listen and support each other.
One thing that is working as an abortive for a lot of people that has only been discovered recently is Red Bull chugged down as quick as you can & ice cold, I can kill anything from a KIP 1-4 with it.

Cheers
Barry

Title: Re: Newbie...sort of
Post by Shaz on Oct 24^th, 2006, 8:15am

Hi H

Sorry to hear you are having a bad time again. I have been free for eighteen months now, but my space is normally about two years, so starting to get a bit nervous now.

Thanks for the tip on Red Bull, Barry, will certainly have a go at that one when things do start up again.

Hang on in there H, and hopefully it would be too long a bout.

Shaz :-*

Title: Re: Newbie...sort of
Post by georgej on Oct 24^th, 2006, 10:21am

Hello H,

Sorry to hear that you're getting hit again, but welcome back.

Since you were here last time, there have been some new treatments come along. Check out the "oxygen info" link at the left side of your screen, also the "Oxygen info, tips and links" thread on the first page of the Medications board. I'm bumping it to the top again. Oxygen, properly administered, is a very effective abortive for many of us. It may make a difference in your experience with CH.

A number of us take melatonin these days as a preventive. It works quite well for some (including me) in reducing the frequency of nighttime hits. Take 6 to 12 mg 1/2 hour before bedtime. Some supplement this with a benedryl tablet. You might also consider 250 mg magnesium supplements along with calcium supplements. Give it a few days to a week--it may not help right away.

There are also some different prescription treatments since you were here last. I won't talk about these, since I do not use them. I'm sure others will be along to talk about these in more detail.

Again, welcome. Read, read, and read. There's a wealth of good information here, and a great group of people who are very knowledgeable and willing to help.

Best wishes,

George

Title: Re: Newbie...sort of
Post by Linda_Howell on Oct 24^th, 2006, 11:29am

Alcohol is a TRIGGER for episodic sufferers. ::)

Title: Re: Newbie...sort of
Post by vietvet2tours on Oct 24^th, 2006, 11:32am

on 10/24/06 at 11:29:01, Linda_Howell wrote:

Alcohol is a TRIGGER for episodic sufferers. ::)

And oxygen ain't so start huffin

Title: Re: Newbie...sort of
Post by georgej on Oct 24^th, 2006, 11:33am

on 10/24/06 at 11:29:01, Linda_Howell wrote:

Alcohol is a TRIGGER for episodic sufferers. ::)

Ditto to that. It seems to affect the majority of episodics that way. It's certainly the case with me.

Why buy trouble?

Best,

George

Title: Re: Newbie...sort of
Post by Linda_Howell on Oct 24^th, 2006, 12:01pm

Print this out and take it to your Dr.

For some strange reason that no one here can fathom...some Dr.s are reluctant to prescribe 02. [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif]

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

Title: Re: Newbie...sort of
Post by Charlie on Oct 24^th, 2006, 7:48pm

Damn!

So sorry they came back.

For the vast majority, alcohol is a big trigger.

I think you should think about seeing doctors if you can. You might get a good one. They may have some good ideas.

Here is the 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. 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: Newbie...sort of
Post by Turts on Oct 24^th, 2006, 7:54pm

sorry to hear that you had to come back.

the good news is that you knew we were here.

wishing you a short cycle

turts

Title: Re: Newbie...sort of
Post by hellavalife on Oct 25^th, 2006, 12:59am

Well thanks to all who replied and since this is a place where "everyone" knows what the heck I'm talking about it feels as though the people here actually listen. Im about to start a new thread i hope to see you all there..."How do you know your cycle is finished?".

Also I would like to say that I have a appointment to a neuro tomorrow morning and Im going to layoff the green lizards. I cant think it helps (to drink) and it can only be a improvement to my health (to stop). I guess I still drank because on two occasions that I drank in the past 10 days I didnt actually get a attack while drinking I still got it at my regular time so I said what the hell.

PF wishes to all,
Hector

Title: Re: Newbie...sort of
Post by Carl_D on Oct 25^th, 2006, 2:53am

If it's a trigger, you're smart to avoid it. I learned by hit and miss which alcohol triggers a CH for me, and so I avoid whatever invites the beast.
Here's to hoping your cycle breaks soon and you get a good neuro.

Peace,
Carl D