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        Cluster Headache Help and Support >> Getting to Know Ya >> 1st time here
        
(Message started by: Tojokom on Mar 18^th, 2008, 4:43pm)

Title: 1st time here
Post by Tojokom on Mar 18^th, 2008, 4:43pm

hello all,

just found this site today and looking it over i think i found a place to talk with others that understand.

atm got that dull squeezing feeling like another is fixing to hit me any minute.

had my 1st bout in 1992 and they thought it was blood pressure related..

had a couple years break from CH and another bout hit..

they have been increasing in attacks and time of attacks for the last 8 years. now i can plan on having 2 bouts a year lasting 3 to 4 months each run.

the longest run of a single headache was almost 4 months in 2003 yes 4 months of eatting advil by the handful, chewing them like M&M's. found a doc that let me try a bit of oxygen lo and behold! it didnt kill it but it was bearable.

have had like 6 mini attacks in last 3 days and kinda dreading the mother of em which i know is comming.

reading over CH info i feel a tad left out. not only do i get them while i'm asleep but i can get them during the course of my regular workday. fine one minute and down and out and headed for the time clock to punch out and go home in less then 5 minutes.

i'm kinda lost on the medical names of types. so it's behind and on top right eye with the icepick stabs thru to the upper teeth. accompanied with eye swelling /tearing and blocked / nasal drainage. bouts norm last 3-4 months at a run. with CH lasting 20 minutes to 5+ hours in duration.

well reckon that covers it in a nut shell

more to come as we get to know ya'll

tojokom

Title: Re: 1st time here
Post by Linda_Howell on Mar 18^th, 2008, 5:07pm

Quote:

reading over CH info i feel a tad left out. not only do i get them while i'm asleep but i can get them during the course of my regular workday.

Tojokom, I'm a little confused. What info did you read here that made what you experience, feel left out? Most...not all, but MOST of us here get hit during the day as well as during the night. So you're certainly not unique in that respect.

If you are still downing the aspirin, advil, Ibuprophen and other OTC meds....STOP. You're tearing up your stomach, you can develope Tinitis AND... the crap doesn't even come close to helping a CH.

You don't mention whether you are seeing a Dr. or are taking any preventatives, like Lithium, Caffergot, Neurontin or Verapamil. I am glad that you have the 02 however...Best abortive in my way of thinking. Safest too.

Linda

Title: Re: 1st time here
Post by Tojokom on Mar 18^th, 2008, 5:11pm

no meds .. been doing this on my own. just the o2 which i found in 2004. before that it was tons of advil. quit on the advil once i found the o2. like i said it dont kill it nor make it go away it just makes it bearable.

looks like i gotta lotta learning to yet to do on what can help.

like i said been doing this on my own and thought i was one those 1 in a million that had a weird problem.

never even thought to surf for ch untill like 2 days ago

tojokom

Title: Re: 1st time here
Post by Linda_Howell on Mar 18^th, 2008, 6:35pm

Here's a little helpful hint while you're looking around here and educating yourself...Go get some of those energy drinks with Caffeine and Taurine in them. (Rock Star, Amp, Rip-it, Red Bull) Chug one at the 1st. sigh of an impending attack. They help.

Go to the O.U.H. web-site...button on the left of where you're reading this now. LOTS of help there.

More questions? Ask Away. :)

Title: Re: 1st time here
Post by Superdave on Mar 18^th, 2008, 6:53pm

Welcome tojokom, :)

You have found the best source of information in the world for cluster headache. Maybe we can help you with your o2 set up, if your not getting 100% o2 at at least 15 lpm your not getting the full benefit of the gas. Click the left side of the page under (oxygen info) for the information you need to make sure you have the proper set up. Also find the post titled “here to help” There is a discussion about attaining the proper equipment

Redbull o2 Redbull o2 Redbull o2 Redbull o2 Redbull o2 Redbull o2

Superdave 8)

Title: Re: 1st time here
Post by coach_bill on Mar 18^th, 2008, 9:36pm

welcome tojo, keep reading you will find so many different ways to help you deal with this shit, also you said 25 mins to 5 hours?? mine last about 45 minutes give or take a few depending how the beast feels that day, but 5 hours man i feel for you already.i have alot of the same things as you, behind one eye mine is left. running nose and eye watering with pain all the way to the teeth too, mine are mainly at night too. but progress to daytime in peak cycle, so your not alone anymore, as much as you thought no one understood, well we do!!. read everything you can let us know your progress.. feel better. coach bill

Title: Re: 1st time here
Post by mikebannon11 on Mar 18^th, 2008, 9:44pm

Welcome Tojokom....I'm very new here as well and I'm learning like you.

One thing I would add....find a neurologist who specializes in headaches.....if you can....and spend the time to see them. Go armed with the info you get from this site regarding meds that can help (like prednisone tapers) and others.

Hopefully, if you are like me and the neuro you find is way far away, your GP will be willing to listen to the neuro and help you out with scrips between visits. Mine tried helping me...sent me to a couple of neurologists who didn't diagnose properly...I found the last neuro on my own and asked him to make the referral. He did....got the report back...and has been very helpful ever since. It's so helpful since the neuro is at a teaching hospital that's 150 miles away.

I've learned more in the three weeks since I found this site than in the previous 5 years combined. The folks here are great......wonderful goodhearted people...and the best thing is...they know it's 'not just a headache'.

Good luck!

Mike

Title: Re: 1st time here
Post by Perediablo on Mar 19^th, 2008, 5:50am

hello Tojokom,

I am new here as well. In the last week I have learned more than I thought possible. Everyone has been so helpful! Listen to 'em, for they are wise in the ways of the beast. The energy drink thing does work for me. You oughtta give it a try. I tried last night for the 1st time and it killed it in about 7-10 minutes! yeeehaw! Good luck! Sending you some vibes :)

Eric

Title: Re: 1st time here
Post by Hal on Mar 19^th, 2008, 6:28am

I'll one-up Mike and Eric and say I've learned more useful stuff in the last week here, than in the last 10 years. I too have found RedBull effective, and also an ice-pack to the back of the neck. And I can't live without Melatonin now. The beast no longer scares me quite as much.

Title: Re: 1st time here
Post by Tojokom on Mar 19^th, 2008, 8:32am

yes have already seen a huge diffence in o2 setup i'm using and what ya'll are using / have. will readdress that issue today. and get it resolved.

funny thing thou i run 3.5 to 5 lpm for 10 mins. off for ten and back on for ten, and seems to help with mine. like i said it dont kill it, just drops it down to a dull throb with the odd power spike.

going to 15lpm will kill it?? ( with the proper mask which i'll get today ) ya'll gotta be kidding i been doing this wrong for 4 yrs ? granted it was odd chance that i stumbled across a doc that knew what ch was and let me try the o2. as far as proper use of the o2 it was a hit and miss thing i did on my own one ch at a time.

rebull ugh tried one just for taste couple years ago ...didnt like the taste if it's Caffeine and Taurine ... reckon guess have find one that dont taste like sodapop

yea i'll be soaking up info and ideas like a sponge. these ch have cost me 3 jobs already ( they wont allow o2 tanks on the job ) and job i'm at now i keep my o2 in the car and just wander out for a few minutes if i need to.

well just wandered in from a 12 hour shift at the job. time fer a nap ( uninteruppted i hope )

see ya'll this afternoon fer some info surfing

tojokom

Title: Re: 1st time here
Post by Guiseppi on Mar 19^th, 2008, 10:11am

Another vote for 02. I can kill a head ache completely, that's totally pain free in 6-8 minutes using only the oxygen. 30 years of dancing with the beast and 02 is still my front line abortive. Must be high flow, at least 15 LPM, using a Non Re Breather mask, and you must start it at the first sign of a hit. The longer you wait, even a matter of minutes, the less effective it is for me.

When you get to the neuro, plan a 2 pronged attack for this thing.

1: a good preventative medication. That's something you take to reduce the frequency and the intensity of the attacks, many to choose from, I use lithium at 1200 mg a day while on cycle. Really cuts down the number of attacks for me.

2: an abortive strategy. The headache hits, now what. As I said before, oxygen is my first line abortive. I also use the occasional imitrex injectable when I;m really getting beat.

Welcome home, I'm so glad you found us, I hop we can steer you in a good direction.

Guiseppi

Title: Re: 1st time here
Post by darknight on Mar 19^th, 2008, 10:51am

listen to guiseppi and the others they are like the CLUSTER HEAD ORACLES!!! ;)

I am just using 02 the minute i feel one coming on i jump straight on it and not had one since i started the 02!!

GOOD LUCK
PFD TO ALL!! 8)

Title: Re: 1st time here
Post by Linda_Howell on Mar 19^th, 2008, 12:51pm

Most of us wouldn't get any relief with 3.5 to 5 lpm. Crank that sucker up or get a regulator that goes much higher. If you cannot get one for whatever reason send me your address (In a pm) and I will mail you one.

Linda

Title: Re: 1st time here
Post by Tojokom on Mar 20^th, 2008, 2:13pm

Sheesh the things we do and have to deal with...

ok get this went to Aptiva ( o2 supplier ) to get couple more tanks. and asked if i could get a nrb mask. lady made like 4 phone calls, hollered to back for Chris ( he had no clue ). she then spoke to the lady i norm deal with everytime i go in there. ( she was sitting like 6 feet away and heard me expalin what i needed and why the 1st time) .... so i go thru the whole deal again and explain it to sandy.

she is like humm ok lemmie go look ..... off she went into the back ..... come back out 10 mins later Nope no nrb masks are here. we can order you one if you want sandy says ... i'm like DUH ...ok ..order me 2 fer waitting 30 minutes ...

clickie clicklie clickie so goes on her comp.... and looks me in the eye and says "your prescription does not allow a NRB mask" i'm like ok i can fix that go ahead and order the mask and i'll get the script here tomorrow. Clickie clickie clickie ok mr spencer you mask will be here in 6 weeks.

i'm like HUH ? 6 weeks? wtf ya gotta wait for some one to recycle some plastic 1st or what ?

so i'm like nevermind just gimmie the bottles i'll be back later.

came home hit CH.com here and called the 2 phone numbers on site in " here to help ya" needless to say i'll have my mask in 3-5 days

thanks Guys and Gals for having handy info ready!

tojokom