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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> First timer
        
(Message started by: geo_nerd on Jun 15^th, 2007, 3:20pm)

Title: First timer
Post by geo_nerd on Jun 15^th, 2007, 3:20pm

Hi all,
I am a new comer to the site, but not the pain. I am 30 yrs old and I have never officially been diagnosed with CH(no health ins.). However, my brother (3 yrs older) also suffers from the same debilitating affliction as the rest of us, and he was officially diagnosed, 5yrs ago, after repeated visits to a stubborn physician. To me the beast feels like an ice pick, being stabbed and rotated, into the temple. This is followed by profuse sweating and uncontrollable restlessness. I am just passing one of my cycles (I think) with about 6 PF days behind me. The time between this cycle and the last was about 1.5 yrs, and this cycle has lasted about 2 months. I find it comforting to know that you all can sympathize with my brother and I. We have often called each other after an attack to get that much needed empathy and understanding. Since I do not have health ins. is there any home remedies that have worked for any of you?

Thanks,
geo_nerd

Title: Re: First timer
Post by Guiseppi on Jun 15^th, 2007, 3:32pm

Welcome to the board, I'm in awe of people like you that near this thing without the benefit of meds.....not something I'd be capable of!

Many find relief with slamming down several cups of coffee at the first hint of a headache. Others find using energy drinks like Red Bull or Monster......the ones that contain caffeine and taurine seem to be the most effective. Again you must slam it down at the first hint to have it work as an abort.

Try frozen peas or a bag of ice on the affected side of the head/back of neck. In a pinch try putting your face in front of a car air conditioning vent with the ac on full, and inhale deeply thru the nostril on the affected side. When I'm caught with nothing else that will take a bad one down several clicks.

Try and scvore some welding oxygen. It's cheap and the welding 02 comes out of the same big tanks the medical 02 comes out of. To work as an abortive it must be started at the first hint of a headache, and you need to breathe pure 02 with no outside air. For me 02 will abort an attack in less then 10 minutes.

Welcome to the board, read like crazy there is lots of awesome advice here. Get your bro to log on also!!

Guiseppi

Title: Re: First timer
Post by LeLimey on Jun 15^th, 2007, 3:34pm

Hello geo nerd

First of all I have to say that with 600 headache types symptoms DO cross and just because your brother has CH it doesn't follow that you will even if your symptoms are similar. You need an accurate diagnosis and an MRI to rule out anything more insidious. I do understand and sympathise with the no insurance aspect, sadly that hits alot of my friends here but I'm hoping someone may be able to give you dvice about getting some diagnosis even without insurance.

Please be aware that the following advice is being given based on what I would say to someone with a CH diagnosis. None of these things can hurt you but if it isn't CH they won't help much either.

There ARE home remedies that can help, strong coffee and red bull (or el cheapo equivalents!) ice or heat - It varies - I like cold but others swear by heat yet thats a trigger for me an ice pack or a bag of frozen peas on the affected side of my head and one on the bag of my neck can really help.

Oxygen is worth looking into even if you have to go down the welders oxygen route. It is as good as medical oxygen as it needs to be 100% pure to be of any use welding so don't worry about that. Someone else will give you better advice on that score than I can.

The coffee and red bull work as they are both vaso constrictors. In a hit the blood vessels on the affected side of your head swell by up to 20x their normal size which is why it hurts so much.

Triptans are meds which constrict the blood vessels thus reducing the pain and they are very effective.

Red Bull and strong coffee work in the same way but you need to chug them fast and at the first twinge - the longer you leave ANY treatment the longer it will take to kick in and the less effective it will be.

I hope this is some help - keep checking back as there are people far more knowledgable about ins and doctors than I who will be able to help you!

Helen

Title: Re: First timer
Post by MR_FLOOR on Jun 15^th, 2007, 3:42pm

Hey Geo,

I'm no doctor but I never heard of 2 family members with CH.

You need to get properly diagnosed even though it sounds like CHs it could be something else.

Lots of people use Red Bull at first sign of an attack slam it down as fast as you can.

Go to a county hosp. see if you can get in without insurance by me we have cook county hosp.you can get in without insurance.Then you can possibly get preventives and o2 and also Imitrex those would be weapons against the beast.

A very good luck to you my friend.

Dave

Title: Re: First timer
Post by geo_nerd on Jun 15^th, 2007, 3:45pm

Thanks for the advice. My bro does not have computer access, so he asked me to speak fro both of us and he said that he would try to set up a profile the next time that we were together.

Title: Re: First timer
Post by LeLimey on Jun 15^th, 2007, 3:49pm

Dave - you may never have heard of two family members with CH but I'm one - I have CH and so does my five year old son who has been diagnosed since the age of three.

We think my maternal uncle had it too as he had such severe headaches he "went mad" from pain and killed himself in 1970 by driving into a tree in one of his "fits of madness" :-/

Title: Re: First timer
Post by geo_nerd on Jun 15^th, 2007, 3:49pm

I have been trying to get in to see a Doc w/out ins. and have been unsuccessful so far. My brothers syptoms and mine have similarities and differences. I would love to get a pro medical opinion and hope to have ins. after the first of the year. Until then I will keep doing the dance and hoping for the best.

Title: Re: First timer
Post by LeLimey on Jun 15^th, 2007, 3:50pm

Geo nerd well welcome to you and your brother! We will do our best to help you both and I hope you both get some pain free time soon

Helen

Title: Re: First timer
Post by thebbz on Jun 15^th, 2007, 4:50pm

Quote:

I have been trying to get in to see a Doc w/out ins. and have been unsuccessful so far.

This statement disturbs me. Just because you dont have insurance you cant seek medical attention? WTF?
Any provider that wont accept partial payment and montly payments on the balance is an unfeeling bastard and you dont want to have them for a doctor anyway.Go to the ER, they cannot deny you medical attention. They may let you die in the waiting room but they cant kick you out. Sling enough snot around on the seats and they will treat you quick.
Listen to Helen. You need a proper diagnosis. You can make payments cant you?
I dont know about you but mine hurt so badly I would sell my mother for the doctor bills. Sorry MOM.
http://www.patientadvocate.org/help.php
You cant get medical attention...I cant accept that.
all the best
jb

Title: Re: First timer
Post by Redd on Jun 15^th, 2007, 5:38pm

There are also some of us who's grandparents and great grandparents, though not officially diagnosed, have had this condition as well, and can be surmized by family member accounts.

Now lets put another oddity into the mix. Six years after my divorce, my ex husband had his first cycle of cluster headaches, and I've been chronic for 22+ years. He used to call me a whimp when I'd be begging him to shoot me, or have to take me to the ER.

Though I don't ever wish this on anyone,...Kharma is a mysterious thing...

Title: Re: First timer
Post by Ray on Jun 15^th, 2007, 5:49pm

Passive agressive karma? LOL, oops, that shouldn't be funny..... Hmmmmm.

Ray

Title: Re: First timer
Post by George_J on Jun 15^th, 2007, 9:34pm

on 06/15/07 at 17:38:06, Redd wrote:

Now lets put another oddity into the mix. Six years after my divorce, my ex husband had his first cycle of cluster headaches, and I've been chronic for 22+ years. He used to call me a whimp when I'd be begging him to shoot me, or have to take me to the ER.

Though I don't ever wish this on anyone,...Kharma is a mysterious thing...

Egad. Remind me to stay on your good side, Pegg.
;;D

Best wishes,

George

Title: Re: First timer
Post by Ray on Jun 15^th, 2007, 11:25pm

Pegg:

My wife was wondering if you would visit my EX- if we bought you a plane ticket.....

[smiley=laugh.gif]

Ray

Title: Re: First timer
Post by MR_FLOOR on Jun 16^th, 2007, 5:49am

on 06/15/07 at 15:49:10, LeLimey wrote:

Dave - you may never have heard of two family members with CH but I'm one - I have CH and so does my five year old son who has been diagnosed since the age of three.

Thats why I love this site so much,I learn something new every time I come on.Now I just have to pray my little ones don't get these mother fers.

Dave

Title: Re: First timer
Post by Ray on Jun 16^th, 2007, 9:13am

My sister has CH for about 25 years now.

Ray

Title: Re: First timer
Post by MR_FLOOR on Jun 16^th, 2007, 9:26am

on 06/16/07 at 09:13:13, Ray wrote:

My sister has CH for about 25 years now.

Ray

I sure spoke out of turn on that one.I did not know they where hereditary.My bad.

Dave

Title: Re: First timer
Post by Redd on Jun 16^th, 2007, 10:23am

Quote:

Egad. Remind me to stay on your good side, Pegg.

Quote:

Pegg:

My wife was wondering if you would visit my EX- if we bought you a plane ticket.....

I didn't do anything to him...sheesh guys. [smiley=laugh.gif]

My concern, is that since both of us are clusterheads, that my kids have a much higher risk of developing this. That scares me more than anything.

:typo

Title: Re: First timer
Post by Guiseppi on Jun 16^th, 2007, 11:53am

Floor, my daughters are 23 and 21 and neither has picked them up yet, something I thank God for every day. Logically, I know it wouldn't be my "fault," but damn I'd sure feel like sh%$!!!! :-[

Guiseppi

Title: Re: First timer
Post by Linda_Howell on Jun 16^th, 2007, 12:50pm

Geo Nerd,

You can also go to any Fire Dept. and they will let you use their oxygen for free. That will only be for good one headache...you can't take up residence there, but it WILL let you know if 02 works for you and go from there.

You do not need a high-priced specialist to prescribe oxygen for you. A PCP or family Dr. can do that. Oxygen is cheap, safe, has no side-effects and won't hurt you even if you are later dianosed with something else.

Linda

Title: Re: First timer
Post by Brewcrew on Jun 16^th, 2007, 1:59pm

on 06/16/07 at 12:50:05, Linda_Howell wrote:

Oxygen is cheap, safe, has no side-effects and won't hurt you...

...unless you use it next to the fireplace or while smoking or cooking with gas. :o

Title: Re: First timer
Post by Linda_Howell on Jun 16^th, 2007, 7:03pm

S.A.

Title: Re: First timer
Post by Linda_Howell on Jun 16^th, 2007, 8:27pm

O.K. disclaimer time.

If you have oxygen in your house do not start a fire in the fireplace, light a cigarette, burn a candle, etc. until wayyyy after you've shut off valves.

Other than that huff on.

I like that...huff on. Can we make that a clusterville-ism?

Title: Re: First timer
Post by Ray on Jun 16^th, 2007, 8:31pm

Hello Everyone:

I am too lazy at the moment to look this up in the medical libraries online, but....

There is NOT a strong possibility that siblings, children, parents, etc., will have CH in common. If anything it is a remote possibility. There are literally thousands registered on this board, if the incidence of CH is about 1:1000 then there should be a few here who report other family members with them. I'm not a betting man, but if I were, I would say that chances are pretty remote that you'll pass this on.

I hope this helps clarify things,

Ray

Title: Re: First timer
Post by Linda_Howell on Jun 16^th, 2007, 8:47pm

Quote:

I would say that chances are pretty remote that you'll pass this on.

I agree with you and others on this subject. There seems to be a "TENDANCY" but it isn't a sure thing. Just like it wasn't a sure thing that both my ex and I are left-handed but none of my 7 kids are.

Besides Helen and Jasper, and a few others whose 'grandparents' had it (touchy subject since they were probably not diagnosed properly)

I do not believe it is hereditary in the sense that blue eyed parents beget blue-eyed children.

I will hope and pray that some researcher or scientist sometime on the future does NOT come up with a genetic link. Helen has already been through the mill with an a$$ who accused her of passing this gene down to her son.

Title: Re: First timer
Post by taraann on Jun 17^th, 2007, 10:03pm

on 06/15/07 at 15:42:38, MR_FLOOR wrote:

my maternal grandpa had ch (which I didn't find out till a few years ago) and back then they were called "histamine headaches". I have had Ch for 9 yrs and well here ya go there is a family history here!!!

modified so this is to everyone.... no one is a doctor here, we dont know if we can pass this on. I pray to GOD that I don't pass this on to my kids. But I believe it is possible, or maybe it will be my grand kids?

Do we know anything about genes.... are any of us qualified to debate this?

Title: Re: First timer
Post by Sandy_C on Jun 19^th, 2007, 4:12pm

Interesting topic.

Both of my grandmothers used to go upstairs with one of "those sick headaches".

One grandmother went up and had to lay down in a dark room with a cool cloth on her forehead - migraines?? Who knows. Nobody was allowed to go upstairs when she was in "one of her states".

The other grandmother used to go to her darkened room and was known to scream an yell in pain- CH? Who knows We always thought she was a bit of a hypochondriac. Maybe we were wrong.

I get migraines from time to time, and I get CH from time to time.

Thanks Grammas.

Sandy

Title: Re: First timer
Post by Rosybabe on Jun 20^th, 2007, 1:55pm

Welcome Geo nerd and brother!!!

My grandmother and mother suffer from migraines and I get migraines and CH in cycles, that is luck or a family thing??