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        New Message Board Archives >> Jan-Mar 2003 >> hi...i'm new here!
        
(Message started by: nadja on Feb 17^th, 2003, 2:04am)

Title: hi...i'm new here!
Post by nadja on Feb 17^th, 2003, 2:04am

nadja here... i'm 24 and have had ungodly headaches all my life. i've never been diagnosed with cluster headaches ~ haven't had the best luck finding good doctors and since migraines run in my family... they have passed my suffering off as that and chronic sinus problems (i've had 5 surgeries in the past 3 yrs) ~ but yet i still find myself ripping my hair out and beating my head into the wall nearly every night, something not common with either migraines or sinus headaches. ??? after last night's episode i decided to do some research and came across this place. :) guess i'm just looking for some support and a little advice. i just can't cope with this pain any longer!

Title: Re: hi...i'm new here!
Post by Mark C on Feb 17^th, 2003, 2:32am

Welcome to the board Nadja,
Sorry you are having so much trouble. Good CH doctors are very hard to find. Education is the best weapon you have. This site and the OUCH site have much information to learn. I will attach a couple of links to help get you started. Good Luck,
Mark

http://www.clusterheadaches.com/quiz.html

http://www.clusterheadaches.org/library/general/index.htm

http://www.clusterheadaches.org/medications.htm

Title: Re: hi...i'm new here!
Post by suzy617 on Feb 17^th, 2003, 5:22am

Hi and welcome Nadja.

Sorry to hear you are in such pain. Please follow Mark's links and read up all you can. You need to find a good neurologist that can diagnose you properly. Let us know how you did on the quiz.

suzy
p.s. ya better read those links cause Mark's got this big ole gun.....and ya better not mess with him. ;)

Title: Re: hi...i'm new here!
Post by tanner on Feb 17^th, 2003, 12:32pm

hi nadja, welcome!!!
i just came in from plowing and shoveling and screwing around with this storm that they apparently aren't having in az. or texas.... grumblegrumble... but back to your post

i am really sorry that you needed to find us here but we will be glad to have you if you find that you belong here. where in michigan? there is "the michigan headache clinic" in ann arbor, dr. joel saper. i personally couldn't stand the bastich but he and his guy's certainly know ch's. if you can get to chicago i would recommend dr. james young. he is the head of rehab at pres. st lukes medical center and a top notch neuro. don't tell anyone but he is the doc that wrote my 02 script even tho i'm physically in maryland.

anyway follow marks links, take suzy's advice and let us know how ya do...

all the best from the great white EAST..... tim

Title: Re: hi...i'm new here!
Post by echo on Feb 17^th, 2003, 12:54pm

Hello nadja and welcome to the board. Hopefully you will be able to use the information available here to procide a 30,000 foot diagonosis as to what type of HA you have, and help determine your preventative approach to controlling the pain.

Visit with a neuro to ascertain what you are being hit with.

Title: hi...i'm new here!
Post by ZAIRA on Feb 17^th, 2003, 1:40pm

Hi Welcome home :D!
I'm 24 years old and I'm suffering of CH for 10 years!
Try to be strong, in this site you are in the right place ;).
I will pray for you and I wish you all the best!

Ciao, Zaira :-*

Title: Re: hi...i'm new here!
Post by cootie on Feb 17^th, 2003, 1:42pm

Hi Nadja.....stick around and you'll get some good advice and prolly a few honks......Pam ;D

Title: Re: hi...i'm new here!
Post by cathy on Feb 17^th, 2003, 4:42pm

Nadja

WELCOME....hope you find the help you need..wishing you PFDAN's

Cathy... :)

Title: Re: hi...i'm new here!
Post by jonny on Feb 17^th, 2003, 4:50pm

HONK HONK!!!

Title: Re: hi...i'm new here!
Post by Roxy on Feb 17^th, 2003, 5:03pm

Hi Nadja....and, welcome.

Hope you can get rid of the pain soon. Just read, read, read. This site is worth it's weight in gold.....so much information.

Wishing you PFDAN,

Tracey

Title: Re: hi...i'm new here!
Post by nadja on Feb 17^th, 2003, 5:25pm

:D oh my! what a welcome!!!

thanx for the links. i did the quiz and i fit all the criteria mentioned with the exception of vomiting. i usually always throw up which i know is more in line with migraines. (shrug) i dunno! does anyone else get nausea with ch's?

in a few weeks i have an appointment at the pain clinic in muskegon (i live in grand rapids) as i also suffer from chronic fatigue syndrome and fibromyalgia. so, while i'm there getting help with all that jazz... i'm hoping he'll either give me some answers or send me to somone who will. if not, i'll hunt down that place in ann arbor or chicago. it's not too much of a drive. 8) i'll just hop on my harley and take a much needed road trip. heheee!

gosh, i'm going cross-eyed trying to go back and forth and comment on everyone's posts. it was another long night and the lack of sleep is slowing me down a tad... think i need a little nap or two. :) anyway, it's so nice to meet all of you! thanx again for the advice and such. ttfn!

love,
nadja

ps. pam ~ "honk if yer tattoo'd"! ;D i think i'll fit right in.

Title: Re: hi...i'm new here!
Post by suzy617 on Feb 17^th, 2003, 6:05pm

I get nausea also but never barf it up. I believe I feel that way because I get so nervous while having the CH and my stomach always turns when I'm nervous.

suzy

Title: Re: hi...i'm new here!
Post by kissmyglass on Feb 17^th, 2003, 6:34pm

Hi Nadja,
This site is full of info & full of awesome people. Thay already gave you some good advise., be sure to check out Marks links... I'm just curious, how often do you get headaches & how long do they last? Taking any meds that work? don't work?

Hope you become Pain Free soon!

Kev C

Title: Re: hi...i'm new here!
Post by nadja on Feb 17^th, 2003, 11:31pm

ummmm... i have them nearly every night ~ always on the left side. then after awhile they stop and when i least expect it... WHAM! another whopper and many others to follow. i'm kinda mad at not keeping a journal about these things. docs have recommended it to me about the fibro and cfids. darn my laziness! i haven't found much help with medication. as i mentioned before i haven't had the best luck with docs. they don't seem to think i need anything to get me thru the nights. "it's just allergies" or "lets try meditation". :-/ how in the world can anyone meditate with seriously violent pain? (not that i'm against meditation mind you.) the last time i was on prednisone it seemed to help but because my immune system is already seriously compromised from the cfids i just can't take it again. it probably sounds weird... but sometimes if i can stand still long enough ~ dipping my wrists in super hot water relieves the pain for a few seconds. and then there's bashing my head in with the rock hard ice-pack or throwing inanimate objects.

anyway, i'm hoping the doc at the pain clinic will help. i've seen him once before and he seemed to be a good listener and hooked me up with a great med for the fibro. i have another sinus surgery two days prior on the 26th. YA! lucky #6! woohoo! (that was said with a great deal of sarcasm) more wonderful pain to look forward to. wow kev... you got yourself a novel here over just a few simple questions. sorry 'bout that. :-X whip out the duct tape!

alright, enough of my whining for one evening. :)
take care and good-night!
love,
nadja

Title: Re: hi...i'm new here!
Post by paul_b on Feb 18^th, 2003, 12:08am

O2 and Imitrex are used by many who have CH. Bring as much info as you can when you see the doc. Good Luck.

Title: Re: hi...i'm new here!
Post by Charlie on Feb 18^th, 2003, 12:18am

Welcome and sorry you are in such pain and it does sound like clusters to me. I bet they wake you out of a sound sleep too?

Anyway, stick around and read all you can here. It's almost always worth it as almost all of us find good things here to ease the pain in one way or another. Here is one I used:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: hi...i'm new here!
Post by nadja on Feb 18^th, 2003, 1:08am

oh wow, i'll try this. i'll try anything! have been on the imitrex. unfortunately it didn't help much. only really works if i catch it when one first comes on... and my headaches always wake me up on full throttle.

thanx! ;)
nadja

Title: Re: hi...i'm new here!
Post by west17m on Feb 18^th, 2003, 11:44am

Wow, I had a roommate with chronic fatigue syndrome my frosh year in college. Nothing like coupling "I can't sleep because of these freaking CH's" with "man, I am so tired I can't get dressed today."

As for doctors that don't understand, if you think your a chronic (you haven't talked about cycles), I would do whatever it takes to get some prevenatives and abortives that work and stock up. Next time you go to your neuro or pain doc, tell them you'd like to be considered for horomone treatment or gamma knife trigeminal surgeory. Both are upper tier treatments and I doubt that you'd get the go ahead, but you'd probably get their attention.

Oh, and if you haven't tried the water thing yet (water X 3), might as well give that a shot. Best of luck.

-- Tag

Title: Re: hi...i'm new here!
Post by nadja on Feb 18^th, 2003, 3:53pm

wow, i really respect your college roomie! how on earth did he pull off school? phew! :o i mean, each case is different... but still... i'm impressed! (standing ovation!) ;D

as for cycles... gosh, i don't know. all these years i thought this type of headache was a migraine... or related to sinus cysts 'cause of the whole runny nose thing during attacks so i wasn't paying much attention ~ but the more i talk to my ent... he's not convinced that these headaches are related even if they are in the same location. he indicated that although this would cause a lot of pressure and some pain... there's no way it should be that extreme. "thanx for telling me now buddy. i've only been going to you for 20 years!" plus i have the fibro headaches which i have 24/7 so no matter what ~ my head hurts. i'm so confused! i guess when i think about it i usually have these hard-core types every night for several weeks to months... then i have a break for another few weeks. sometimes i'll go a day or two without a major attack and i'll get hopeful that they're gone for good. then that evening i'll be unpleasantly surprised. anyway, i don't know if that answers your question or not.

now onto more research and jotting notes to bring to my doc.

you guys are just so nice... if i don't have ch's ~ i'll wanna stick around anyway. ;)

Title: Are you sure surgery is the best option?
Post by das on Feb 18^th, 2003, 4:21pm

Hi Nadja,

After reading dozens of horror stories about people that were operated on for no good reason, I would say don't do it.

Even neuros that seem to know about CHs, don't usually know enough. Before I found my current Doc, I was seeing a neuro who appeared to know what he was talking about, but in retrospect did not.

I am of the opinion that unless a neuro is focussed solely on migraines and CHs, that they are most likely not the right Doc for the job.

Why are you getting this surgery again? Think about it. If you have CHs, then the surgery and rehab and pain you are about to undergo will be for nothing.

Medecine is like any skill. There will be your highly skilled and accomplished doctors and there will be the ones that aren't as good. Think about it... a bad doctor !!!! Just like a bad drummer or a bad golfer etc. How scary is that?

If you ask me, CHs will come and go as they please meds or no meds. Meds can help for a while, but the CHs will always come back..... unfortunately..

Good Luck!

Title: Re: hi...i'm new here!
Post by nadja on Feb 18^th, 2003, 5:06pm

the surgery is to remove cysts that keep growing back in my sinus cavities, both sides. they're not sure why... but if i don't get the surgery ~ the darn things will get bigger and bigger until i can't breathe out of my nose. a few of the ones they pulled out last time were as big as an egg. that was a few months ago. the pressure is always gone right away, after the initial rehab that is ~ but i still get these headaches. that's why i started this research. things aren't adding up like they should. the guy that's doing the surgery is an ent (ear-nose-throat), not a neurologist or what have you... so i forgive him for being somewhat naive in the headache category. i tell him where my headaches are which is around the sinus area... so he assumes it's sinus related just as i have. but like i said ~ it's just not adding up. he agrees fully now that these must be seperate problems and was thrilled to hear i finally made an appointment with the pain clinic. i'm only frustrated that it's taken so long for either of us to think twice about the cause. i have had second opinions about it with other ent's and they all agree i need these cysts removed and keep trying to come up with treatments to prevent them from growing but to no avail. so i stick to the doc i am most comfortable with... seeing as i've known him all my life nearly ~ and i'll probably keep getting surgery ('cause it's a bitch to breathe thru your mouth) until that magic day the cure for me is found. thanx so much for your concern. i do appreciate it more than i can say. and when i go neuro-shopping, i'll keep your advice in mind. :)

thanx again!
nadja