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(Message started by: misserin on Jun 25^th, 2003, 4:38pm)

Title: Woops! My first post.
Post by misserin on Jun 25^th, 2003, 4:38pm

:o Hello, My name is Erin, and some ettiquet I have for posting a question before even introducing myself
sorry!!!
First let me say that it is so wonderful knowing this website is here. I have been feeling so alone and lost with all of this. My fiance tries very hard to understand and is very supportive, but it just isnt the same.
I have been suffering from headaches for as long as I can remember, but in 98 they turned very bizarre in nature and I was misdiagnosed with chronic sinusitis and the whole nine. I went to every doctor/practitioner/naturopath (you name it) that I could find, even a chiropractor. Finally I went to see a neurologist. She was so excited to see me and happily pointed out certain irregularities in my eye that a "typical" person with this headache may have. Although she told me there is no profile for a sufferer. The headaches went into remission and I thought maybe I was done with them. Until this spring.
They hit me full force and much more intensely than ever. I was told before I had chronic paroxysmal hemicrania (fancy words for pain on one side of the head that is recurrent) but now I'm experiencing a magnitude of pain I dont remember having. I am wondering if anyone else's headaches started "small" so to speak? I fear I might be headed for clusters soon.
Anti-inflamms still work for me, whereas immitrex so far has not, but then I suffer rebound headaches.
My local doctor has now put me on neurontin, but I am very fearful of taking a medicine all the time.
I am returning to Salt Lake on Tuesday July 1st. And would be more than happy to share anything that I learn there.
If you have read my post, thank you so very much. I would love to chat with anyone about theories, explanations, ideas. Since it still is relatively new to me, I have all the drive and energy (and anger) to keep trying to push for an explanation, a cure, an answer!!!
(I think we deserve it dammit)
I dont want to think that we are "screwed" entirely, though for the moment, what else can we say????
I want very much to study pharmacy
if this pain is what drives me to find a better answer for people, so be it. I will do what I can!
lots of support,
misserin

Title: Re: Woops! My first post.
Post by Opus on Jun 25^th, 2003, 5:30pm

Erin,
Your story sound familiar to me. I have suffered from sinus problems my whole life but every too years I would have a bad infection with ( what I thought at the time ) horrible pain. I and the doctors thought it was from the sinus infection and since it went away in 6 to 8 weeks nothing more was done except pain killers which seemed to work, I also took to sleeping with my head propped up ( to help my sinuses drain ) which stopped the wake up head aches. Spring 2002 I started having sinus problems and got headaches so I started a massive sinus clean out with steam and vapors, and lots of water. Then one night I got my first Kip10 and after a few hours, ( in that cycle they lasted 6 hours ) I had the ambulance called. I was psychotic from the pain and the ambulance crew slapped a 02 mask on my face. the pain dropped to a Kip5 and I went to the ER. The ER doc x-rayed my sinuses, which were clear and diagnosed me with CH because the o2 helped.

Now after a horrible cycle lasting 4 months I am on my third cycle in 14 months so I guess my cycle has changed. I am also getting migraines between the CH's which is new for me. So I can say that though I have had this for 10 years it has gotten much worse in the last 14 months. The cycle now and the last one have been light so next spring I am going to be prepared for a dozy.

Opus/Paul http://www.imgmag.org/images/sunny22/Gifs/Welcome.gif

Title: Re: Woops! My first post.
Post by OneEyeBlind on Jun 25^th, 2003, 5:47pm

Welcome to the board. I have only had one cycle so I really don't have much experience. I have suffered from sinus problems for years .... but let me tell ya ... my first cluster was NOT a sinus headache and I knew it. Coming out of bed full force like jet propelled from a rocket isn't sinus pain. Although it did take the doc a few visits to figure out what was wrong.

Good luck with the research !!!

Title: Re: Woops! My first post.
Post by Live4Fun on Jun 25^th, 2003, 7:05pm

MissErin,

Welcome to the nut house ;D Sorry you had to find us, but glad you made it.

As for your question as to if they get worse every cycle... mine certainly do. I remember my first cycle about 10 years ago. They were just small annoying headaches that didn't last more than 15 minutes. I too was diagnosed with a sinus infection, then migraines, then tension headaches, then migraines, then sinusitis, then back to migraines... :o What a nightmare it was for 8 years.

Now, in my 10th cycle, currently, the pain has been worse than the last cycle, which at the time I thought was about the worst I could take. Finally got on some Prednisone and double the normal verapimil (240) to stop these bastards. Been pretty good for about 7 days now, but pred almost up and I feel the bastard trying to poke through. So back to the old drawing board until the cycle is up.

Anywho, didn't mean to go on like that. Like I said welcome aboard. Read all you can. Talk to everyone you can. These are a great bunch of people here, some strange, some humorous, some just plain wacky, but they all are wonderful. ;D ;D

PFDANs,

Bryan

Title: Re: Woops! My first post.
Post by Charlie on Jun 25^th, 2003, 8:45pm

http://www.smiliegenerator.de/s14/smilies-4228.png

Here you are. You found us. Damn sorry you had a reason but feel free to rant and rave if need be.

I can tell you that there is hope. They sometimes disappear. I haven't been hit since 1991 and I don't miss them. I wish I had something difinitive to say about why they stopped but the only thing different is I became nocturnal and drink gallons of coffee.....although, I've always drunk a lot of coffee.

Stick around

Charlie

Title: Re: Woops! My first post.
Post by cootie on Jun 25^th, 2003, 9:12pm

A welcome wagon WELCOME to ya misserin......lots of luck goin ut to you and you should learn alot around here. Pam that thinks a resident pharmasist would be cool here :)

Title: Re: Woops! My first post.
Post by Jackie on Jun 25^th, 2003, 9:21pm

Welcome and good luck to you, Erin......

and....yep to what "the cootster" said. A resident pharmasist would be cool. I don't think we have one... :D

Jacks 8)

Title: Re: Woops! My first post.
Post by Drk^Angel on Jun 25^th, 2003, 10:14pm

Welcome to the board! Sorry that the beast is shredding your cranium with a rusty cheese grater. Welcome to the board! Good luck!

PFDAN................................... Drk^Angel

Title: Re: Woops! My first post.
Post by paul_b on Jun 25^th, 2003, 10:27pm

Welcome. Good place to rant and rave and share insights.

Title: Re: Woops! My first post.
Post by misserin on Jun 26^th, 2003, 10:54am

My gosh! Thank you for all the welcoming!!!!!!!
And thank you all for sharing stories (Bryan) feel free to rant and rave to me whenever you want, I myself tend to be quite the writer at times, so I dont mind at all if someone wants to share their stories voluminously!!!
And if its a resident pharmacist that we need here on this site, well hell, I'll just have to try harder and harder now that I have many new reasons to fight and back me up. I'm sorry that I will be what? FIVE YEARS in the making. I'm taking organic chemistry in the fall and that will be the thing that makes or breaks my hopeful carreer. But the good thing is, I'll be in a constant realm of learning. I'll be looking and pouring through the rigors of my program for possible explanations, clues, connections (you know I will). Plus, I should have access to the forefront of medical research on treatment of these hideous things. All I have to do now is get into the program!!!!
Hey, did you see Star Trek where they let that slug slide into Chekov's ear? (sorry, I'm NO trekie, hopefully I'm not blemishing our good Trek history) But that's what I feel like sometimes. Like its lodged itself in the right side of my head and getting bigger!
Occasionally it shifts around to stretch or something...
Wasnt that scene our worst nightmare as a kid??????
To think of it all.....
So thank you for the support. Thank you all for being here. I plan to stay.
Lots of support
Misserin

Title: Re: Woops! My first post.
Post by oringkid on Jun 26^th, 2003, 12:41pm

Welcome!!

You will find more info here than anywhere else and lots of caring people!

Oh, btw LOL!!

Quote:

Hey, did you see Star Wars where they let that slug slide into Sulu's ear? (sorry, I'm NO trekkie, hopefully I'm not blemishing our good Trek history) But that's what I feel like sometimes. Like its lodged itself in the right side of my head and getting bigger!
Occasionally it shifts around to stretch or something...

I am a Trekkie LOL and I would be remiss if I didn't point out that 1) Star Trek, not Star Wars and 2) It was Chekov, not Sulu LOL! Just funnin' with ya!
But I CAN relate to that feeling!

Welcome Again!
Sherry

Title: Re: Woops! My first post.
Post by Bob_Johnson on Jun 26^th, 2003, 12:51pm

It's not unusual for our headaches to change intensity, location, frequency, etc. over time. It took about seven-years before the strange pains I had evolved into a pattern which was classical cluster.

To your fear of meds: This is not the time to let you non-rational side take hold. If you were diabetic, would you want to avoid your daily insulin? We do what we need to do to find relief and comfort. We learn about the meds we use to see if there are side effects we need to watch for--but, please, don't fear the unknown. Our plates are full enough with the pain, etc.

Title: Re: Woops! My first post.
Post by Opus on Jun 27^th, 2003, 3:30pm

Sherry,
It's Treker,

Erin, I ussally get a pain in the ear too, you might be on to something.

Opus/Paul

Title: Re: Woops! My first post.
Post by cathy on Jun 27^th, 2003, 4:13pm

Misserin...Welcome to the board...sorry your having such a bad time... :-/

Sending you PF vibes.

Cathy

Title: Re: Woops! My first post.
Post by oringkid on Jun 27^th, 2003, 4:16pm

LOL Opus!

Only an officially registered Treker would know that!

The outside world uses Trekkie! LMAO!

Sherry

Title: Re: Woops! My first post.
Post by misserin on Jun 28^th, 2003, 10:40am

Gosh, of all the blunders
to think I would say Star WARS?
sheesh. Its a weird personality quirk of mine, when I get nervous I will make a mistake, I do just that!!!!!!!!!!!! :o
so it goes.
many many apologies to all trekies everywhere
and to chekov
who has my apologies, but I could have sworn he was with Sulu? (sp??) ag, I should quit while I'm only so far in the hole....
;D
heh heh heh

Title: Re: Woops! My first post.
Post by cbolony on Jun 28^th, 2003, 11:07am

Welcome Aboard misserin sorry you had to find this place but it is the best place to be if you have clusters.
Lots of info just keep on reading and posting to answer your questions

Title: Re: Woops! My first post.
Post by fubar on Jun 28^th, 2003, 12:30pm

on 06/27/03 at 15:30:48, Opus wrote:

Sherry,
It's Treker,

Treker? In these parts they are called trekkies.

Misserin, my headaches started out full throttle. The first one happened right in the middle of great water-skiing run, and I thought I was going to die. In fact, I was virtually paralyzed with pain, and face down in the water. I remember thinking there was no way I was going to be able to get my self turned over to get air and then the boat came around and pulled me out of the water. The next attack (next few, actually) happened right after climax during sex... let me tell you that scared my (ex) wife to death. It's not cool when you suffer a Kip10 every time you have some decent sex... anyway. So, the answer is, for me they did not start small.

-Fu

Title: Re: Woops! My first post.
Post by kellya408 on Jun 30^th, 2003, 10:31pm

Misserin:
I just saw your post today (just found the website this weekend). Since my clusters seem to occur when I wake up and I'm going through a cycle, I'm staying up for a while after my normal time (I should be studying for finals - lol).
Your experiences with the docs sound a lot like mine. You also sound like you have a lot on your plate as well (fiance, school, etc). I'm in law school at night and working full time during the day - I can definitely relate. Feel free to vent to me whenever you feel the need!
(Also, I didn't like the idea of the "prescription cocktail" the docs had me start last week, but as do all the sufferers, I have a life to live, and this beast is starting to get on my last nerve! LOL).
I must admit, that I don't feel quite so alone after finding this site. I only hope I can make it to a convention as well!
Kelly

Title: Re: Woops! My first post.
Post by Opus on Jul 1^st, 2003, 4:40pm

Kelly,
I started with just middle of the night CH and ones upon waking, I eliminated most of the middle of the night ones by sleeping in a semi upright position, a recliner works well or a lot of pillows, I use 7. Then is discovered if I got 6 hours of sleep or less I didn't get one upon waking, now that time is down to 5 hours but it is still better than lots of others here during their cycles, so I consider myself blessed in the sleep area.

Opus/Paul

Title: Re: Woops! My first post.
Post by kellya408 on Jul 1^st, 2003, 9:22pm

Opus:
Thanks a lot for the tip - I'll definitely give the pillows a try!
Thanks again,
Kelly ;D

Title: Re: Woops! My first post.
Post by Opus on Jul 2^nd, 2003, 2:59pm

You are welcome Kelly

Opus/Paul