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Topic: New Here ~ OMG What Is This Pain!?!? (Read 465 times) |
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CryingInPain
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New Here ~ OMG What Is This Pain!?!?
« on: Aug 22nd, 2003, 9:28pm » |
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Hello Everyone,
I am new here. I have been reading this site all day between the screaming fits of pain! Two weeks ago I stood up and was talking just fine and all of a sudden I had such severe pain it brought me to my knees I have never felt such pain before in my LIFE , I didnt even know such pain exsisted! I dealt with this pain for a week then got scared because my right eye would twitch and felt like it was going to pop out of socket and all sorts of weird feelings but only on my right side I would just flail myself around the room in any attempt to stop the pain. I tried the Er and tried the Drs of course to find out this new term " Cluster Headaches" my first reaction was HEADACHE you are saying this is only a damn HEADACHE you have got to be kidding there has to be a tumor or something!?!?!
But after calming down and reading this site I have realized the Drs were right...reading posts and such it is almost scary because 99 percent of what I have read I have called my husband in and said OMG LOOK LOOK I HAVE THAT TOO!!!
This is only my first "cluster" and I am so confused as to what caused this just out of the blue?? I didnt have any head trauma no change in my life that is drastic enough to stick out to me....they just started???
I was put on 50mg of Imitrex its day two of taking it when the pain starts but it seems to only cut the pain down to 40-45 mins instead of two hours which hey I will CERTAINTLY take but 5 mins and I am begging for death let alone 40 mins of it ....
Any help or insight would be greatly appreciated... I am so thankful I found this site ....my loved ones are trying to understand but when I say my dr said I have CH's they smile and nod and you know they are thinking....you are obsessing over a HEADACHE??
Jen
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Opus
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #1 on: Aug 22nd, 2003, 9:36pm » |
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Jen,
Try to get O2 and imitrex injections, nasal spray works too but not as fast. The pills are only good for migraines, Keep reading, keep learning, and,
Opus/Paul
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| « Last Edit: Aug 22nd, 2003, 9:36pm by Opus » |
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Peppermint
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #2 on: Aug 22nd, 2003, 9:50pm » |
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Wow. Well Jen, this is the best place to get info and support besides your immediate loved ones. Look around, read up, and learn. Its amazing that "clusters headaches" were called on the first shot. As you read you'll see there's more to the term than just "headache". Read all the tips and info to the left of this board, you'll be glad you did.
Good luck!
Peppermint
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When playing in the gym, beware of steel beams. - M. Amyx
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FYI - I am NOT a clusterhead.
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ShariRae
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #3 on: Aug 22nd, 2003, 9:54pm » |
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Hi! So sorry you had to find us but...Welcome aboard.
There is so much information here, just click on the buttons on the left. Read all you can & ask questions, you may want to try ice..or a bag of frozen peas (they work great cuz the bag moulds to your head better). Some also find heat helps..a lot of this is trial & error as what works for some doesnt work for all. Ask your doc for an O2 script as it usually stops "the beast" dead in his tracks for most. Remember, you are not alone so feel free to ask questions, vent, cry whatever. We are all sufferes or supporters & we understand.
Huggs
Shari
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CathiP
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #4 on: Aug 22nd, 2003, 9:54pm » |
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Jen,
What Opus said.......read everything here...go button by button....arm yourself with all the info you can....and ask questions!!
I am sorry you need this site, but I am glad you have found it-take the cluster quiz.....and ask questions!!
Above all, remember to focus on the time between the hits, rather than the hits themselves.
Welcome, Jen, and be PF!
Cathi
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Roxy
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #5 on: Aug 22nd, 2003, 9:55pm » |
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Jen, I'm so sorry you've been hit with these sob's. Sounds like yours started just like mine....woke up one morning, and there they were.
You need to read everything you can on this board, then go to the OUCH site (button to the left), and read there. Call your dr. again and see if he will prescribe you imitrex (vials) and 02.
PFDAN,
Tracey
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Patrick_A
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #6 on: Aug 22nd, 2003, 10:15pm » |
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You are in the right place hon. Make an appt with a Neuro as fast as ya can. Go to the OUCH site for referalls. Loads of preventatives that work for people. I presently am on Prednisone and Verapamil and i have been PF for almost a week now. Before i was a screaming mess. Someone here will help you, PM me and i will help you! 90% of people can find relief in some form or fashion! Dont hesitate though, you'll be glad ya didnt!
Patrick
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Lori
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #7 on: Aug 22nd, 2003, 10:48pm » |
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Really sorry this has hit you. No one knows for sure what causes them so read and learn so you can get proper treatment for these horrible things. Go to the OUCH button (on the left) then click on Cluster Help and then Medications. Print and take to your doctor to get started on some sort of preventative. Also call around to the neurologists in you area and ask if they have experience with treating clusters and when you find one who does..go check him out. Do read as much on treatments though so you know what they should be recommending to you. And remember, it's trial and error sometimes with the meds. Don't give up. Print the oxygen info too and take to doc (button on left above OUCH button).
Let us know how your doing and glad you found us.
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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Charlie
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #8 on: Aug 22nd, 2003, 11:46pm » |
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Welcome to our ward Jen. What a shame you had reason to find us. Mine hit me in 1969 and started out of the blue. I'd never felt anything like it. Mine lasted about 20 minutes, usually and I'd get hit several times a day....always about an hour or so after going to bed as well.
As an epileptic, I was already seeing a neurologist. He didn't have to put me though tests. He figured it out quickly. Below is a link to a circulatory technique that Dr. Wright taught me in a few minutes the same day he diagnosed them. It often dramatically shortened my attacks and was effective for me about 75% of the time. Here it is:
http://www.netsync.net/users/charlies/
The link below is to a letter which does a wonderful job explaining to friends, families and employers that this has no relationship to what people think of as a headache. Simon's letter is definitely worth printing:
http://www.ouch-uk.org/ch/note_colleagues.cfm
Feel free to rant and rave all you want. There is much to learn here and ways to deal with this horror. You can be sure we know exactly what you're going through.
Charlie
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tsayswhy
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #9 on: Aug 22nd, 2003, 11:50pm » |
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 crying in pain been there: just new here too!!! These people in here will talk to u like they are your best friend and help u through this. They will tell u where to read everything u need to know. i am taking 100mg imitrex but going intomorrow to ask about O2 everyone seems to be talking about it. go to my post "confuse" They gave me some really good sites to look up. They really understand in here u might get more surport in this site then u do anywhere so stick with it and good-luck i hope u feel better :tsayswhy
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OneEyeBlind
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #11 on: Aug 23rd, 2003, 3:27am » |
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Welcome to the board but sorry you have to be here. Imitrex injections and O2 are my saviors. If you try the o2 make sure you read the info on how to use it properly (see button on left). There is also a tip on how to make your imitrex last longer if you are using the shots (yea, another button on the left). Read all you can ... it will help ! Try and find a preventative as well. Imitrex and O2 will abort the headaches. Verapamil might prevent them from coming back. Good luck !!!
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The mad viking
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #12 on: Aug 23rd, 2003, 5:52am » |
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Hi there
This is my coctail
Verapamil Retard 120mgX5-7/daily during cycle 3 weeks after last hit tapering down with 1 verap every 3/4 days until you are on 1 a day.1 a day for another 2 weeks you can decide to quit the verap or take 1 a day.Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 70-60-50-40-30-20-10-5mg every 3/4 day
This work fine for me
The very best from Svenn
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Miss_Deleny
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #13 on: Aug 23rd, 2003, 8:21am » |
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Hi Jen, sorry that you had to come find us but glad that you did. Like so many above has said, read all that you can and find a nero that knows about CH. I dont have CH but my fiance' does. He is the reason I am here ... have your husband come here as well and look around and read. Its amazing how much "we" supporters learn by looking around ourselves. I understand more about what Christopher goes through since coming here.
Hoping for PFDaN for you!
~April~
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badfly
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #14 on: Aug 23rd, 2003, 9:29am » |
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Welcome Jen Im sorry you had to find this board, but now that you have, I am sure things will start to improve. INFORMATION is the best weapon you have in your fight to deal with CH. 50mg Imitrex is better then nothing, but Imitrax injections is best. It takes around 5 minutes before you get relief, and thats waaay better then 40! The nasel spray (Imitrex too) takes 15 to 20 minutes, and the pill only comes 3rd. Try the O2 as well definatly!
As I said sorry the Beast is on your back. PFDAN to you!
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for (int i=0;i<infinity;i++)
{Shout("Get this BEAST off my back !!!");}
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Linda T
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #15 on: Aug 23rd, 2003, 1:01pm » |
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Dear Jen: Sorry you have to be here. Stick around, you will find help but you need to look for it.
I had the same reaction as you when I first went to the ER! HEADACHE!! You must be kidding. This is a tumor. Of course, this was in 1984 so I was not so lucky as to have the net.
One night in the spring of 1984 I was just laying around watching tv and BANG. Ended up having a 2-3 hour cluster each night at precisely 7:30 p.m. Each night, every night for 3 (maybe 4) months. But, remarkably, I did not have another episode for 11 years. Yes, Virginia, there is a Santa Claus. And hope too!
I wish I could tell you why, when, where and how. I can't. I can only share my experiences with you and hope that somehow that helps. I am partial to very hot water. As soon as you feel the ch starting run (I do mean run - I would go from kip 1 to 10 in about 30 seconds) for the shower. A few minutes under the hot water would abort rather quickly. Unfortunately, this sopped working 100% of the time after awhile. But it may help you now.
Good luck and read alot. There are some other "home remedies" here that might help.
PFDAN always, Linda T
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stevegeebe
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #16 on: Aug 23rd, 2003, 6:23pm » |
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Jen,
You're lucky and ....well....unlucky.
I feel certain that upon the realization of your findings that you could possibly not ask yourself about the direction of your luck.
Alot of folks here went many years with no Meds and Dr.'s who had know clue.
You look around this place, get smart(er), get a plan, and get some relief.
Steve G
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smfaison
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #17 on: Aug 23rd, 2003, 8:11pm » |
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Hi Jen,
I know that "holy crap, I must have a brain tumor" feeling. I have suffered as an episodic all of my life (47 years). The best abortive I ever used was the injectible Imitrex. I am also taking Verapamil, and Depakote, and Bellergel as preventives. Because of the Bellergel, I can no longer use the Imitrex, but am using Stadol nasal spray, if all else fails. What you will find is that stuff that works for some people, doesn't work at all for others. Stay after your neurologist. I pestered mine constantly until he found a combination of drugs that worked. This is my first cluster episode since moving to a new town, and had to go through a lot of trial and error. I started out thinking that my neuro here was an ass, but he has come through for me in the end. Good luck
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katethecelt
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #18 on: Aug 23rd, 2003, 11:23pm » |
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Hi Jen & Welcome to our Family,
You have been given outstanding advice. I just had my longest cycle of CH - 14 weeks. I used the treatments people suggested with much success. Listen to them.
Try using the Imitrex Tip (click on button on right) for the injections. The tabs don't work well for me at all, but they would help with CH's at a KIP 2-3. Really strong coffee and a brisk walk worked about the same.
I took Benadryl or Dramamine to help me sleep. I had no appetite, but not eating made things worse.
There are a number of abortive meds you can try. Ask the doc for samples.
Email or IM people too.
Wishing you Pain Free Days And Nights,
Kate
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zanychef
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Re: New Here ~ OMG What Is This Pain!?!?
« Reply #19 on: Aug 24th, 2003, 4:12pm » |
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hi crying
sorry you got them, glad you found here,its helped me a lot an i only got here 2 weeks ago after 20 yrs of being on my own not knowing another clusterhead,its good to vent here an info is of the first class
i too have no brain tumor (like the rest of us i hope)
pfdan to you
ian
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plenty of time to sleep now me headaches aint too bad
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