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alanap98
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New Here and going insane!
« on: Feb 15th, 2005, 3:50pm » |
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Hi all! My name is Alana and I am 37 and I have been suffering with these clusters for years but no one could ever tell me what they were. So glad to finally find a place where there are others that know what I am going through and maybe wont think I am crazy!
My clusters dont have a set pattern I am gauranteed to get one at 3 in the morning while deep asleep then I usually get 3 or 4 during the day. I feel like a raving lunatic when one strikes! I can nopt talk I just pace and run around like a chicken with its head cut off! My family doesn't understand them they think I am just being a whimp I think! It is the most severe pain I could ever imagine then a bit worse! I would not wish this on my worst enemy. I have tried vicodin and darvocet tylenol with codeine etc. and honestly nothing works! the pain does go away usually within an hour but I don't think its because of the drugs! I was wondering is ther anythng out there that maybe could help with the attacks. The bad thing is right now I do not have any insurance so going to the Dr right now would be costly. But I am willing to pay the cost if there is something out there that will help! This seriies of attacks has been going on for 9 days now and I am really at my wits end and on the verge of going insane I think! I have young children and I am being takin over by this beast in my head and its not fair! to me or to the kids! I just want peace back! Thank goodness I usually only get the episodes twice a year but they have never lasted this long or been this severe. usually just 2 a day and only last about 20-30 minutes but this time they are 3-4 times a day lasting an hour to an hour and a half. HELP! Any advice would be greatly appreciated any home remedies I'll try anything at this point! I jsut want my life back!
Well sorry for rambling on but whew it feels good to hopefully talk to others that understand what I am going through! Thank you all in advance and thank you for all being so honest and having this board!
Alana
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Mr. Happy
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Re: New Here and going insane!
« Reply #1 on: Feb 15th, 2005, 4:41pm » |
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on Feb 15th, 2005, 3:50pm, alanap98 wrote:| The bad thing is right now I do not have any insurance so going to the Dr right now would be costly. |
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No insurance sure can put a crimp in things, but even with insurance, you may get a medical run around.
There's a thread going in the Meds section on Kudzu, and your input would be most welcome. Who knows, you may be a success story waiting to happen.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1107368408
Kudzu Sales and Distribution Co,
RJ
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Linda_Howell
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Re: New Here and going insane!
« Reply #2 on: Feb 15th, 2005, 5:47pm » |
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Alana,
Quote:| . I have tried vicodin and darvocet tylenol with codeine etc. and honestly nothing works! the pain does go away usually within an hour but I don't think its because of the drugs! I |
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You can bet your sweet bippy it isn't because of them. Narcotics are great for a limited time when you've had a tooth pulled or broken an ankle....they do diddley-squat for Cluster Headaches hon. And if you were to take them as often as you needed to for the pain of a CH.........you'd not only be addicted very soon, but you'd have rebounds headaches from them. So please stay away from them.
I'm glad you found us. There is no better place for sharing and learning than right here. We're a family and I for one welcome you...but stay away from that Randy guy. He's a trouble-maker! lol
Just kidding. Just kidding. 
Linda
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nani
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Re: New Here and going insane!
« Reply #3 on: Feb 15th, 2005, 5:50pm » |
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Hi Alana...welcome. I have a kudzu success story. Look at the medication/treatment board for it. Hope you get some relief! Pain free wishes, nani
edited to add:  DOH! Mr Happy already gave you a link! Thanks RJ
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| « Last Edit: Feb 15th, 2005, 5:51pm by nani » |
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MaxPayne
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Re: New Here and going insane!
« Reply #4 on: Feb 15th, 2005, 6:13pm » |
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Sorry to see ya here, but welcome to the frontyard of hell anyway. I pity you ppl that have to have insurance to go see the doctor, there should be a law against it. Don't you pay taxes and shit? Would be a riot in this country if we suddenly had to do that. Medication should be cheap and affordable and available to everybody. That's my opinion anyway. The only thing that works for me when I go into a clusterperiod is Imitrex, check out with your doc and just get it. Gonna save you some pain at least.
Best of luck to you!
Robert
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Ghost
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Re: New Here and going insane!
« Reply #5 on: Feb 15th, 2005, 6:34pm » |
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well here is my 2 cents .. thanks to alot of people here a good way to knock the edge off fast is oxygen and a good rebreather mask. I was in same boat sort of did find a doc that told me what it is trying to kill me but had no support from family and friends ... still dont . Just remember to try to enjoy the time between attacks whenever poss. we r here for you when ever you need to talk or for no reason at all.
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***WARNING*** Oxygen will rust your pipes!
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John_T
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Re: New Here and going insane!
« Reply #6 on: Feb 15th, 2005, 6:51pm » |
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Hi Alana
Quote:Posted by: ghost62
well here is my 2 cents .. thanks to alot of people here a good way to knock the edge off fast is oxygen and a good rebreather mask.
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I'm with ghost here. O2 works for a lot of people and is not that expensive. My insurance deductable is higher than the annual price.
Good luck to you!
John
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Mr. Happy
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Re: New Here and going insane!
« Reply #7 on: Feb 15th, 2005, 9:56pm » |
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Oh poo. Was so caught up in Kudzu, I forgot about O2, the prime ingredient.
http://www.headachesupportgroups.com/oxygen/oxygen.htm
You gotta get that, first.
RJ
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maureen
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Re: New Here and going insane!
« Reply #8 on: Feb 15th, 2005, 10:40pm » |
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Hello Alana
I'm on board with the 02. I waited out my last cycle thinking it wouldn't help and then when I got this one I was told get 02 from everyone one this board so finally I did now I kick my self daily for waiting. It really will make your life alot easier and much more PF
Good luck
Maureen
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cherylc
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Re: New Here and going insane!
« Reply #9 on: Feb 16th, 2005, 12:24am » |
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OXYGEN!!!! Thanks to this site my doctor prescribed 02 for me with a non-rebreather mask and output up to 15 L per min. This has been my shortest and easiest(?) cycle ever. I also take melatonin at night to help sleep.
Try 02 first, cheapest method out there
Cheryl
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RichardN
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Re: New Here and going insane!
« Reply #10 on: Feb 16th, 2005, 1:19am » |
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Welcome Alana & sorry you have to be here, but you hit the jackpot when it comes to people who truly know your pain.
Oxygen works for many of us (70%) as an abortive. I can't take the (expensive) triptans like Imitrex because of high cholesterol and arterie blockage. 02 is my only abortive and it keeps me from many a "dance". You have to have a script for 02 and the proper regulator and mask (15 lpm reg & non-rebreather mask)
Read up on the 02 info and copy to take to whatever doc you can afford . . . this is necessary as so many doctors have no experience with CH and they tend not to equate 02 with pain relief . . . . usually Pain Relief = shot/pill, more tests (admittedly necessary to rule out other causes), and occasionally surgery.
When you get your 02, DO NOT USE THE STRAP ON THE MASK! I am now able to kill the beast without getting out of bed and doing the "dance" by breathing for a few minutes (for me, usually 5-15 min), and back to sleep.
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I can live with the beast as long as I don't have to "dance" with the bastard.
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RichardN
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Re: New Here and going insane!
« Reply #11 on: Feb 16th, 2005, 1:38am » |
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. . . .go to the "Treatments, Medications board and scan the "Oxygen users poll" that cherylc started. It will give you a good idea of how we use it.
In the post above, I said "When you get 02", because I will bug you until you try it. Many times on this board we will read "if this doesn't work (refering to a new med), I'll try 02", or similar statement . . . . when oxygen should be the first thing you try. When someone sees my 02 tank in my van or they catch me using it and give me that "you poor thing" look . . . it just gives me an opportunity to tell them about clusters and the effectiveness of hi-flo 02.
I can deal if I don't have to dance.
PM me (or anyone else here) if we can help
Stick arround, read, read, read and ask all the questions you want.
Be safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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alanap98
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Re: New Here and going insane!
« Reply #12 on: Feb 16th, 2005, 2:34am » |
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Hi all and thanks for the advice I am gonna try to go to the Dr tomorrow its so hard to find one that will take yu without insurance! Arrrrrgh! so hopefully will get the O2 started!
Printed out a lot of things that I found on here today and showed to family and for once I finally think they understand that I am not a whimp for dancing around the house moaning and groaning pacing etc etc etc... So thanks already you have helped me there!
I have noticed though with this last attack which I just got over a few minutes ago that I get a bulge in my temple area not the regular just pulsing of the arteries that happens all the time but this was like a bulge like the muscle in my head had got into a knot anyone experience this? and it hurt extremley to just touch the temple! wierd!
well I am gonna hopefully have a lil relief for a few minutes so am gonna do some more research today has been horrible more pain that pain free never been this intense before. But I am going to Dr tomorrow even if I have to go to ER I will get script for O2 somehow!
if anyone ever wants to message me that would be great too! Thanks have a good night
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sandie99
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Re: New Here and going insane!
« Reply #13 on: Feb 16th, 2005, 2:45am » |
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Welcome Alana! 
Sorry that you're here. I am so sorry for the pain CH causes you. But always recall, you are NOT insane, you just have insane PAIN.
Finding the right meds can take some time (I should know, I'm on preventative 7 or 8, lost count), but you'll find the combo which works for you. I know you will! 02 has helped lots of folkes in here.
Now, just relax and read all the info about ch you possibly can. It's easier to fight once you know the enemy, right?
Anyways, anytime you need advice/comfort/answers/support/whatever, just come here.
Best wishes & PFdays,
Sandie99
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CH happends, Live anyway! PF days to us all!
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MaxPayne
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Re: New Here and going insane!
« Reply #14 on: Feb 16th, 2005, 9:17am » |
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The reason you are getting that bulge is because you are tensing those muscles during the attack. The same happens to me, I get extremely sore at the temples after a CH attack. I also get toothaches sometimes because of the pain.. usually have to go and brush my teeth really hard during an attack.
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It takes two to tango... me and the Beast, sometimes I lead, sometimes I don't....
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RDJ
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Re: New Here and going insane!
« Reply #15 on: Feb 16th, 2005, 10:39am » |
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without insurance this might be a little spendy, but I use the verapamill, which is a fairly cheap drug, I also went to the chiropractor, twice, that is about 50 bucks a time. Alos give the water 3X a try. I turly thiink that the chriopractor working on my neck was the key factor. Also If you are at the doctor, ask them for some free samples of Imetrex, I did and got 6 nasals for free. Also If you can catch it soon enough, sinus buster nasal spray, from the grocery store, $4.99 cheap, but keep it in a cool place works too somewhat. The verapamill, and chiroprator got rid of my CH in a couple of days.
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MaxPayne
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Re: New Here and going insane!
« Reply #16 on: Feb 16th, 2005, 2:59pm » |
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Personally I don't think going to a chiropractor would do me much good concerning my CH. Think he must've pulled my head clean of for it to work. The shit doesn't have anything to do with muscles or bones. But what does it 4 ya is good so just keep on truckin'
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It takes two to tango... me and the Beast, sometimes I lead, sometimes I don't....
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