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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> My first post(s)
        
(Message started by: Cygnus on Oct 13^th, 2004, 7:32pm)

Title: My first post(s)
Post by Cygnus on Oct 13^th, 2004, 7:32pm

Hi everyone. I just joined, wanted to say hi and tell a little about myself. It’s kind of a long post. Sorry about that. I’m just so glad that there’s a group like this out there. You see, I simply don’t know anybody who suffers from CH. I’ve tried to talk to others about it. I’ll say something like, “I suffer from these terrible headaches.” And the other person will say something like, “Oh, yeah. I get terrible headaches, too.” But I can tell by their tone of voice that they have absolutely no concept of the suffering I endure. I noticed some of you use a rating system (k1-9?) to rate the severity of your headaches. I can’t do that. Mine are always k 10, because it’s the worst pain I have ever felt. Some last longer than others, but all struggles with the beast are equally excruciating for me.
Anyway, I’d like to tell you a little about myself before I get into that. When I’m not dancing with the beast, my favorite thing in the world to do is attend rock and roll concerts. My favorite artists include, but are not limited to, Rush, Phish, The Allman Brothers’ Band, moe., Gov’t Mule, and Steely Dan. When there is no show to go to, I’m either listening to rock and roll music or watching The Simpsons. I have almost all the episodes on VHS. I love to play chess. If anyone is interested, I’m always up for a correspondence game on my other favorite website, Red Hot Pawn, where I play under the name player42. Check it out: http://www.redhotpawn.com/profile/playerprofile.php?uid=18623. I also like to read, especially sci-fi and fantasy. My favorite author is Orson Scott Card, but I also enjoy Terry Goodkind, Robert Jordan, Douglas Adams, and many others.
I’m 25 years old these days. I got my first headache when I was 20 years old. At the time, I was attending The College of Santa Fe as a creative writing major and using A LOT of marijuana and magic mushrooms, smoking cigarettes, and drinking occasionally. At first, I thought it was just a side effect from all the things I was putting my body through at the time. I never felt pain like that, though; concentrated to one side of my forehead, and so bad I was incapacitated, and reduced to a helpless, whimpering child. No drug I could think of seemed to work. Not painkillers, not weed, nothing! First, they were every four days or so, then every two days, then I was up to one every day. Then, thankfully, they stopped suddenly. I thought I was out of the woods.

Title: Part II
Post by Cygnus on Oct 13^th, 2004, 7:33pm

I was, in fact, out of the woods for two whole years. My second cycle started when I was 22 years old, and attending The University of New Mexico in Albuquerque. I was still smokin’ a lot of weed and drinking a little more frequently, but I was no longer using hallucinogenics. It was then I realized that something was very wrong. When the headaches increased back up to one every day, I finally went to the doctor. She prescribed some amatryptaline (or something like that) and the headaches seemed to go away, but it may have been just the end of my cycle.
The third cycle in my lifetime started just this past Sunday morning. I was awake for 15 minutes before it started. Today, things are different. I’ve entirely stopped smoking cigarettes and weed some time ago. I still drink, but not very much at all. I’ve got my bachelor’s degree in psychology and I work as a social worker’s assistant in a mental hospital (that’s right; with the crazies). I’m up for a big promotion and raise very soon. I’m just too darn busy for these headaches; I’ve got a career to think about now!
Fortunately, I’ve got a lovely and very supportive girlfriend these days. She has seen my suffering and is willing to try almost anything to alleviate it. I’ve been reading some of your posts; she’s willing to try providing sexual release for me to see if that helps. :-)
It’s terrible that people like us have to endure this. Seriously, I wouldn’t wish this kind of pain on my worst enemy. My shortest bout was 20 minutes long. Longest was 1 hour and 15 minutes. Most are about 40 minutes, though. I just had another on Tuesday morning, so, based on the pattern that seems to be developing, I’m bracing for another one tomorrow morning. At least I am fortunate enough to have PF days like today during my cycle.
During the “phantom” phase, I immediately seek darkness and quiet, as my headaches seem to be sensitive to light and sound. I take a bunch of ibuprofen, mostly for piece of mind, as it doesn’t seem to make any difference. Soon, the dance begins. I lay down, sit up, writhe and squirm, break out into a cold sweat, and whine like a little girl. Sometimes, I pray, even though I don’t really believe in God. It’s a sad, sorry sight.
Today, I went to my doctor and she prescribed some more amatryptaline. I’ll start taking them tonight and see if they actually prevent or dull the headaches.
In browsing around the message boards, I’ve noticed that at least one of you has contemplated suicide. I have to say something about that, as my major job function is preventing suicide. DON’T DO IT. Please, try to remember that all headaches eventually end. Maintain hope that your cycle will end and you will go back into remission. If that fails, think of us! Think of all the people who would lose hope knowing that you’ve left us! Think of the newbies like me, just starting out; reaching out for some hope and support from fellow sufferers. I’d hate to lose you.
Well, thank you for reading. Thank you for letting me get a few things off my chest. I feel so much better now that I got to write about it (even if nobody reads it). Thanks to some of your suggestions of home remedies that have worked for people on this site, I have a little more hope; more ideas I can try out. I hope you can provide support for me and that I can return the favor. See ya!

Title: Re: My first post(s)
Post by thebbz on Oct 13^th, 2004, 7:52pm

Mr. Cygnus,
Have you been to a neuro and been properly diagnosed? This I would advise. Cool a head shrinker!!!
Try to understand that some of us have a bit tougher battle. My episodes for instance are once to twice a year for 2 to 4 months of constant relentless K7 to 9's many every day and night. I wont rate a 10 black out and wife has me on the way to the ER when that happens.Alcohol is a trigger for alot of us. Proper diagnosis is critical .... :o Hope you are doing better 8)
BB
BTW: Prayer is a life saver,now and forever.

Title: Re: My first post(s)
Post by TxBasslady on Oct 13^th, 2004, 11:23pm

This site has been a life saver to many here.

Valuable information....the best friends you will ever find...and the best support in the World.

Read all you can.....then read some more.

Good luck to you....

PF vibes,

Jean

Title: Re: shrooms
Post by JJA on Oct 14^th, 2004, 6:23am

on 10/13/04 at 19:33:55, Cygnus wrote:

I was still smokin’ a lot of weed and drinking a little more frequently, but I was no longer using hallucinogenics. It was then I realized that something was very wrong. When the headaches increased back up to one every day...

You probably know, but... that may explain a lot. Many of us use magic mushrooms to prevent our headaches. In fact, I'm surprised that your first cycle came at all while you were using them. Check out http://www.clusterbusters.com

Jesse

Title: Re: My first post(s)
Post by Prense on Oct 14^th, 2004, 9:35am

The Kip scale is more than just a pain scale. Read it and you will see why.

Chris

Title: Re: My first post(s)
Post by Cygnus on Oct 14^th, 2004, 11:40am

Hello again.
PF day so far. *crosses fingers*
Thanks everyone for your support.
I haven't been referred to a neuro, but I have been positively diagnosed by two doctors so far.
Yes, I realize that some have it tougher than I do, but please do not underestimate my struggle. I'm sorry, but I think it's rude to downplay somebody else's pain just because yours is worse.
After reading the info on Kip, I think I'll give myself a 9, only because I'm never suicidal. All my attacks are 9, although (as I said before) some don't last as long as others.
About mushrooms... I've never had an attack while actually under the unfluence, but I have had them soon afterwards. I guess everybody resonds to different remedies. I'm putting my faith in the amatryplatine for now; it seems to be working so far.
I wish you all good health and PF days, no exceptions!

Title: Re: My first post(s)
Post by karma on Oct 14^th, 2004, 12:01pm

Cygnus,
Read and learn as much as possible. Take what you need and leave the rest.
Its often difficult to know the real intentions of what people post because you aren't face to face but remember that everyone here cares and understands.
Good luck and read up the oxygen.

Title: Re: My first post(s)
Post by BlueMeanie on Oct 14^th, 2004, 7:42pm

Welcome Cygnus,

No one is here to downplay your pain. Believe me, everyone here knows your pain.

Check out the 02 info. It's the cheapest, safest, and one of the most reliable meds for aborting CH's.

Read all the info you can.

Take care.

Title: Re: My first post(s)
Post by thebbz on Oct 15^th, 2004, 9:10pm

Cygnus,
One CH is as bad as another ..Hope your doing better. I have found here we are all on the same boat, regardless of severity. ;;D I still would advise, a visit with a neuro, preferably one with CH knowledge. All the best in your battle with the beast.... ;;D ;)
BB

Title: Re: My first post(s)
Post by Jonny on Oct 15^th, 2004, 9:20pm

Hmmmmm

Title: Re: My first post(s)
Post by nani on Oct 15^th, 2004, 9:42pm

Welcome fellow New Mexican and I'm sorry you're here. Go back to your doctor and get a referral to a neurologist. I'm assuming that you are working at UNM - can't think of another psych hospital that's still around...anyway there are good neurologists at UNM hospital. I don't think what you're taking will be enough. Hang in there, and if you've been reading the board, you should know that it's not a good idea to take things personally. Here you get all the support you need and a lot of good natured teasing. [smiley=hug.gif]

Title: Re: My first post(s)
Post by godsjoy777 on Oct 15^th, 2004, 10:58pm

Hey there fellow sufferer.......You might look for a Neuro that could be listed on this sight or referred....I found one from this site......The only one I could trust....Many Drs just don't understand the nature of this beast.....and you could waste a lot of time and energy with your regular Dr......I wasted YEARS......Thank God.....I found this site.....and I found my Neuro.....

Read....read...read....dittos on the OXYGEN.....water....water....water....and prayer......I

Blessings,
Karen

Title: Re: My first post(s)
Post by Cygnus on Oct 16^th, 2004, 12:40am

[smiley=hiya.gif]
Hi all!
Thanks again for the kind words.
I got hit HARD this morning. Another k9 like always, but this one just didn't want to give up! An hour and 50 minutes I wrestled with the beast. Longest I've ever had. And I didn't get to the E.R. to try O2 like I want to.
I hate missing work, too. Oh, well.
I got a nice promotion today!! *beams*
Will be making A LOT more money very soon. [smiley=smug.gif]
Will start looking for a neuro Monday; thanks for the advice.
Yes, I do work at UNM. Please don't tell my supervisor that I spend so much time on the message boards and chess boards. :-[
PF vibes to all.
I'll see you around, especially if you go crazy in Albuquerque. [smiley=wave.gif]

Title: Re: My first post(s)
Post by nani on Oct 16^th, 2004, 11:33am

Quote:

Please don't tell my supervisor that I spend so much time on the message boards and chess boards.

OK I won't tell as long as you don't let anybody out until you're sure they're really better... ;;D

Title: Re: My first post(s)
Post by Cygnus on Oct 16^th, 2004, 8:17pm

Hello again.
You guys are great!
Got hit hard again today, three times this morning.[smiley=gocrazy.gif]
But, I've got good news. I made it to the emergency room and tried out the O2. WOW! It worked like a charm. [smiley=cool2.gif] [smiley=biggrin.gif]
My bastard insurance company won't cover the O2 because I don't have Bronchitus or pnemonia. :'(
Paid for my own tank and regulator, though. Rental is just over $50 a month. Very much worth it just for peace of mind. I feel like an old man, but, hey, I'll put on a cocktail dress and a pair of pumps if it'll stop the headaches! [smiley=yikes.gif]
Also got a bottle of generic midrin capsules. I feel like I'm ready to take on any beast, now! Can anybody tell me if this midrin stuff works?
Also got a neuro referral, will make an appointment on Monday (btw, thanks for the name, nami [smiley=hug.gif])
PF vibes to all!!
Will keep you posted!

Title: Re: My first post(s)
Post by Kris_in_SJ on Oct 16^th, 2004, 8:29pm

Hi Cygnus,

To my knowledge, taking Midrin for a cluster is somewhat like taking an aspirin for a broken leg.

Glad to hear you have the O2 though. It will help you abort. You still will need a good preventative, and a Prednisone taper is helpful until that kicks in (for many of us).

You might find this link helpful. It certainly was for me.

http://www.future-drugs.com/admin/articlefile/ERN020304.PDF

Many wishes for PFDAN!

Kris