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Topic: Look what I found... (Read 656 times) |
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Jeepgun
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Re: Look what I found...
« Reply #1 on: Apr 19th, 2005, 4:59pm » |
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Awwww....
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Jonny
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Re: Look what I found...
« Reply #2 on: Apr 19th, 2005, 5:01pm » |
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It's kinda hard to be mean with tears in your eyes 
It was a long journey home but I had made it 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Bob P
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Re: Look what I found...
« Reply #3 on: Apr 19th, 2005, 5:01pm » |
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And what a nice bunch of responses to his post.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Jeepgun
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BOHICA!!!
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Re: Look what I found...
« Reply #4 on: Apr 19th, 2005, 5:04pm » |
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on Apr 19th, 2005, 5:01pm, Jonny wrote:It's kinda hard to be mean with tears in your eyes
It was a long journey home but I had made it |
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I'm glad, bro'. Glad for all of us, really...
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Her: "Have you ever hit a deer?"
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Her: ..... "WHAT is the MATTER with you!?"
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nani
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Got kudzu?
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Re: Look what I found...
« Reply #5 on: Apr 19th, 2005, 5:04pm » |
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on Apr 19th, 2005, 5:01pm, Jonny wrote:It's kinda hard to be mean with tears in your eyes
It was a long journey home but I had made it |
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I know that I'm sure glad you did!! Love you, lil bro 
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Others may come and go, but MY power is MINE.
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pattik
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Re: Look what I found...
« Reply #6 on: Apr 19th, 2005, 5:06pm » |
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Everything they've all said, and more 
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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LeLimey
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Re: Look what I found...
« Reply #7 on: Apr 19th, 2005, 5:12pm » |
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I'm pretty glad you are here too..
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Jonny
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Re: Look what I found...
« Reply #8 on: Apr 19th, 2005, 5:19pm » |
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Why dont everyone go find their first post or guestbook entry and post it here, should be some nice reading.
Sorry Patti....not trying to hijack your thread....just dont want this to be an "All about jonny" thread
Now go find your posts folks!!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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pattik
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Re: Look what I found...
« Reply #9 on: Apr 19th, 2005, 5:25pm » |
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I started on the old board as "Patricia"..
Posted by Patricia (152.163.207.77) on November 19, 1999 at 20:21:46:
This autumn was the first time in over 15 years that
I have gone completely without my yearly autumn clusters (which usually go for four to five weeks).
After reading about a possible seratonin connection over the internet, I researched a natural version of Prozac--L-5-hydroxytryptophan (nicknamed 5-HTP).
I have always felt that the waning daylight of autumn
was somehow involved, along with the general stresses of the holiday season.
I began taking 5-HTP twice a day since mid September, since natural products take longer to take effect.
So far so good--just a couple of very minor headaches.
Edited to add: This board and the folks here have been a Godsend to me. I've found friends to share ideas and much information to help with the pain.
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| « Last Edit: Apr 19th, 2005, 6:48pm by pattik » |
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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Jonny
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Re: Look what I found...
« Reply #10 on: Apr 19th, 2005, 5:28pm » |
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on Apr 19th, 2005, 5:25pm, pattik wrote:I started on the old board as "Patricia"..
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Well slap my ass!!!!.....LMAO
I did not know that....I thought you just showed up recently ....LOL
I guess you have known me for some time 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Bob P
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Shut up Bob!
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Re: Look what I found...
« Reply #11 on: Apr 19th, 2005, 5:35pm » |
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Quote:Reading the two accounts on the home page of this site brought tears to my eyes. Tears not caused by the pain in the left side of my head but by the sympathy I have for the writers. I'm 48 years old and have "suffered" for 30 years. One or two bouts a year, 6 to 10 weeks per session, 2 to 3 headaches a day. Right now I'm in week four of my current cluster. I live on Verapimil, Ercaf and lidocaine nasal spray. Forget the not to exceed dosage. I'll take it till the circulation in my fingers and toes is completely gone if it lessens the pain. It's very comforting to read the accounts of other suffers and know I'm not alone. Tonite as I pray to the Lord that he gives me a decent nights sleep, I'll include each and every one of you. Hang tough.
bob pahlow <rpahlow@calpoly.edu>
San Luis Obispo, CA USA
Wednesday, January 06, 1999 at 13:23:17 (EST) |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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BobG
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Re: Look what I found...
« Reply #12 on: Apr 19th, 2005, 5:45pm » |
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Back on the last century when I first found this site internet message boards were a little crude. We had to write our message and mail it to DJ. Then he would type it in his Texas Instruments computer, transfer it to a cassette tape and forward it to a programmer who could post it for us.
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Stay stressed. Never relax. Never sleep. Ever.
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Margi
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Re: Look what I found...
« Reply #13 on: Apr 19th, 2005, 5:53pm » |
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BobP and Jonny are just newbies.....
here's my first post. BobG was quick to caution me about the use of welder's oxygen. He's an oldtimer though.
Posted by Margi on October 30, 1998 at 15:18:53:
My husband has been suffering from CH for 20 years and we have yet to find a doctor that will treat him for it. He has been treated for sinusitis (penicillin), migraines (imitrex - quickly built up immunity), and pain relief (toradol, ferrinol, etc.). I have tried treating him with feverfew (which lessened the severity but didn't avert the attacks and you have to take it for a long time before you see results).
Right now, because of this site we are trying the water therapy and inhaling pure oxygen (that we have with our welding supply but can't seem to find a doctor who will prescribe it!). He is getting some relief (his first sleep in over a week!) - thanks, Jerry! He has been on a waiting list to see a neuro at the end of November, but I doubt he will still be in this cycle by then so he probably won't want to attend only to be sent for more cat scans, bloodwork, etc., etc. He is on a waiting list for the headache clinic at the Foothills Hospital. Oh yes, that waiting list is ONE YEAR LONG!!!
I guess we'll keep doing what we're doing, but it would sure help if anyone knew of a doctor in the Calgary, Alberta Canada area that believes in Clusters and won't put him through any more "lab rat" testing.
Any help would be greatly appreciated.
My heart goes out to all you CHers and your support people.
Thanks for listening.
here's BobG's response to me:
Posted by Bob G on October 31, 1998 at 04:15:36:
In Reply to: Wife of a sufferer - frustrated with no medical assistance posted by Margi on October 30, 1998 at 15:18:53:
Please be careful with the oxygen that came from a welding supply store. There is a big difference between welding oxygen and medical grade oxygen.
wow, we've all learned SO much since then!!
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| « Last Edit: Apr 19th, 2005, 5:54pm by Margi » |
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..Danielle..
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Re: Look what I found...
« Reply #14 on: Apr 19th, 2005, 5:54pm » |
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Quote:Why dont everyone go find their first post or guestbook entry and post it here, should be some nice reading.
Sorry Patti....not trying to hijack your thread....just dont want this to be an "All about jonny" thread
Now go find your posts folks!!! |
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Quote: Lloydminster, Saskatchewan, Canada
« on: Nov 30th, 2004, 1:40am »
------------------------------------------------------------------------ --------
How's that for an adress ? Not the worst out there by far, yet a mouthful all the same.
My name is Danielle. A CH from the north.
I am a photographer, and mom of two. My husband has a real job so we can own our own acreage outside the city.
I found this site a while ago, but when your out of cycle you try to forget about the pain. They're back, but building up slowly, so the preventative drugs will be put to use soon.
I was up late and reading the posts from everyone, laughing till I hurt. Thought i'd better introduce myself and quit scavenging from the site without giving back.
Thanks for being here.
Danielle |
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Wasn't that long ago, but I had been lurking for at least a year before that....
lurking again lately...have some other health issues that my prevents were masking...dealing with them now...hopefully i'll be healthy by summer, just in time for the next cycle... 
Danielle
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Keep your face to the sunshine and you cannot see the shadow. -Helen Keller
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Jeepgun
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BOHICA!!!
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Re: Look what I found...
« Reply #15 on: Apr 19th, 2005, 6:20pm » |
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March, 2004
(This was when my azzhead neuro diagnosed me with "cluster migraines." )
Hello, everyone. I can't tell you how pleased I am to find this board... I have suffered for the past four years from cluster migraines. I thought they were allergy related. My cycles usually come every autumn and last until mid-winter, but this time, a new cycle started two months ago, and this one is the worst one yet. Pain so bad that I'm banging my head on my desk, crushing my palm into my right eye, sobbing in pain, and begging for death.
I've been through two wars, been stabbed, burned, beat up, had my face ground to pulp in bike wrecks.... NOTHING is worse than a cluster headache. I'd rather have ALL of these things happen, than to deal with clusters.
No matter how cultured, how civilized, how learned we are, pain turns us all into raving animals with no logic, reason, or desire for anything but relief.
This most recent cycle brings four and five clusters each day, almost like clockwork. I can count on having one at mid-morning, and I can count on having one at 10:30 at night. I also get one around midnight, and another around 2 a.m.
The others blindside me and come on with little or no warning, and feel like someone is jamming a screwdriver into my right eye, and twisting it a few times real hard.
In desperation, I finally made a visit to my neurologist yesterday. He put me on 500 mg of Depakote. Today is the first pain-free day I've had in over 6 weeks.
Anyway... Glad to find this group, and I look forward to participating.
-Frank
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| « Last Edit: Apr 19th, 2005, 6:20pm by Jeepgun » |
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Her: "Have you ever hit a deer?"
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Her: ..... "WHAT is the MATTER with you!?"
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E-Double
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Re: Look what I found...
« Reply #16 on: Apr 19th, 2005, 6:40pm » |
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on Jun 14th, 2004, 9:08am, E-Double wrote:Hi all,
I never introduced myself when I joined this list. Was in major panic mode as I'm sure many have been before.
I am a 30 yr. old Special Education Teacher/ Behavior Analyst. I currently run "home programs/schools" for newly diagnosed children (babies) with Autism and consult for families, as well as lecture/run clinincs/training series for new teachers in my field.
I've had these headaches for nearly a decade and they only seemed to come in the spring and fall ( Iguess that is my cycle) and would just wake me up in the middle of the night. They never effected me during "waking" hours until this time last year and are doing so again NOW. They would bring me to my knees but honestly I just would suck them up. I would pace, tie a bandana around my head as tight as I could, use steam yet I never did anything about them until last year. I finally went to a Dr. and told me it was allergies. Ran tests not Neurologicals or anything to do with headaches but allergy tests. He made suggestions. So I followed them. The problem is or was that by the time the " suggestions" worked my cycle was over. So was it due to allergies? NOPE!!!!! Again they occurred so I tried all the Dr's recommendations and this time nothing.
NOTHING helped. None of the medicines that would treat my problem alleviated the headaches or prevented them.
NOT ALLERGIES!
I'm currently going through my recent cycle.
Been a doozy and I've been up what seems like for years. Almost become afraid to sleep because they will attack!!! I'm burning out since they come during the day as well and I can't rest at all.
It has effected my whole life. I feel tremendously guilty because my fiance has to see me pacing around in tears and there is nothing she can do. That's the worst thing. I think not feeling helpless yourself but the one you love feeling helpless. Atleast that's how I see it.
IT also has been effecting my work, I can't think so I can't teach or I can't sit still or get my mind off these damn headaches!!!!! I feel guilty that I can't treat my students and provide the best that I know how! 
Anyway...
I have my first visit to the Neurologist (hope she's good) today. I was lucky to have some strings pulled to go see her. I called dozens and they all said not for months  . Well that sucks becaus eby then they'll be gone!!!!! And I will go about life as usual untill the next attack. Hard not to be cynical!!
So I just wanted to thank everyone and introduce myself.
I'm a good guy who just wants to help.
Thanks again!! 
Eric/ E/ E-Double/ Whatever ya want to call me!! Be well
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Hmmmmm so what's changed....
1) Now diagnosed
2) Now use meds
3) Now 31
4) Now married
5) Now reached 1 long yr dealing with this Chit......
NO complaints!!! If it weren't for finding this place 1-4 would definitely not have happened and I'm sure I wouldn't have lived long enough to enjoy this yr. and the rest of my life!!
Thank you and tons of love!
Eric
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| « Last Edit: Apr 19th, 2005, 6:41pm by E-Double » |
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I can't believe that I have to bang my
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Gonna take a breath and try again.
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mynm156
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Re: Look what I found...
« Reply #17 on: Apr 19th, 2005, 6:46pm » |
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If we only knew then what we know now.. 
Nothin but love baby. hahahahah
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"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
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BobG
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Re: Look what I found...
« Reply #18 on: Apr 19th, 2005, 7:17pm » |
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on Apr 19th, 2005, 5:53pm, Margi wrote:
here's my first post. BobG was quick to caution me about the use of welder's oxygen. He's an oldtimer though.
here's BobG's response to me:
Please be careful with the oxygen that came from a welding supply store. There is a big difference between welding oxygen and medical grade oxygen.
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LMAO Margi. I have since changed my outlook about welders O2. I try to lean to the side of caution when new suggestions for treatments come along. The use of welders O2 was new back then. Then we had “new” shrooms, pepper-up-the-nose, melatonin, DannyBoy’s free trip to Africa and kudzu. One time we had a suggestion to “spit in a glass of water and see how the flem floats”. There’s been a lot of “new” treatments over the years.
Be careful out there folks.
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Jonny
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Re: Look what I found...
« Reply #19 on: Apr 19th, 2005, 7:24pm » |
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on Apr 19th, 2005, 7:17pm, BobG wrote:| I try to lean to the side of caution when new suggestions for treatments come along. |
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And you were oh so right to be cautious Bob.....unless you deal with welding 02 you dont know what you are getting.
You did good Bob
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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pattik
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Re: Look what I found...
« Reply #20 on: Apr 19th, 2005, 7:25pm » |
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on Apr 19th, 2005, 7:17pm, BobG wrote:
Then we had “new” shrooms, pepper-up-the-nose, melatonin, DannyBoy’s free trip to Africa and kudzu. One time we had a suggestion to “spit in a glass of water and see how the flem floats”. There’s been a lot of “new” treatments over the years.
Be careful out there folks. |
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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lilboo
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Re: Look what I found...
« Reply #21 on: Apr 19th, 2005, 10:50pm » |
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Hi there, I actually found my first post. I've been coming here for several years, so many things have happened since then like the death of my best friend 7/17/00 then my dad 1/05/01. My husband had a heart attack this past November he's doing much better now after having a quadruple bypass. I try to stop by on a daily basis to see if anything new has popped up. I get a real kick out of most of you, this site really makes makes my day. Thank you for being here. Maybe I'll start talking more.
Here's my first post:
Posted by Kathy (205.188.198.59) on April 10, 2000 at 00:15:08:
My husband has been getting these CH's for about 20 years and he has been on most of the meds I've seen here. I am new to the site and was hoping to find something new that might help, I have learned to leave him alone when he has these episodes, although they can last for days at a time. I used to think that the pain couldn't possibly be that bad and then I started reading the material in this site and now I have a better understanding of it all, thank you and please keep looking for a cure no one should have to suffer.
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Charlie
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Re: Look what I found...
« Reply #22 on: Apr 20th, 2005, 3:17am » |
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Here's mine from August, 2000. Lots of crackpots were posting at this time.
Hi Robin: I'm 54 and haven't suffered in many years (probably because of age and anticonvulsants (depakote) but when I was first diagnosed with these wall-bangers, I was taught a biofeedback technique. I was skeptical but it did help during the attacks. As these are vascular, I was told to "think" of redirecting bloodflow from behind my eye, down my neck and into my arms and hands. As my hands warmed, the throbbing gradually subsided behind my eye. It takes intense concentration, a cool, dark room, and for me no "help" as it just gets in the way. This kind of thing is fairly easy to learn and I found it lessens the severity of the attacks as well as duration and allowed me a little sleep. I also had good results with Inderal but I no longer need it. All the best--Charlie Strand
How things change and stay the same.
Fun stuff.
Charlie
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Renee
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Re: Look what I found...
« Reply #23 on: Apr 20th, 2005, 5:13am » |
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I believe I had posted to other's posts prior to this and never really had a "formal" first post introducing myself but here is the first post originated by me:
Quote:initial appt with neuro??
« on: Nov 29th, 2003, 10:07pm
dear lifesavers during my time of pain,
i have my first appt. with a neuro this coming wednesday. it is with the houston headache clinic's dallas office...figure that out?
anyway...i was finally diagnosed with CH after 7 years of lots of continual ha and neckaches. The e.r. doc gave me a shot of pred with pain meds and the ha went away, for 2 whole days..yippee. I have all the symptoms now that I've researched CH...droopy eye, stuffy nostril, pain over eye and side of head...all occuring only of left side...ALWAYS!
I'm not sleeping thru the night and when I am asleep i'm having nightmares of what the initial appt might be like....you know, brain tumor, etc. etc.
what i'm asking is....what is the consensus out there for what tests are done and/or how the initial neuro appt goes, etc etc...typical first meds....etc.
please help soothe my anxiety because dealing with the ha is enough without the nightmares and unknown coming up on wednesday.
i hope your thanksgiving brought lots of full tummies, heavy eyes and pain free days.
renee (aka txcowgirl) |
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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ExplodingEyeBall
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Re: Look what I found...
« Reply #24 on: Apr 20th, 2005, 9:05am » |
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I wouldn't know where to start looking. It's probably just a bunch of incoherant babbling any way.
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Just poke out my eye and get it over with!!!
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