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naka425
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I can't do this anymore
« on: Nov 8th, 2007, 10:53am » |
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Hello,
I’m 25 years old and have head cluster headaches since I was 8. (I know that I don't need to describe the pain as you all know what I'm talking about) As a child I thought it was my teeth causing this overbearing pain on the right side of my face. So I would go to the dentist and guess what tooth I thought it was. Calling them my "toothache headaches". I have had a root canal and a tooth pulled.. for nothing of course. It wasn’t until I was 18 that my mom really started to understand the pain I was in and took me to the emergency room where they of course said. "Looks to me like she is suffering from a migraine". So off to my regular doctor I went seeking treatment for a "migraine". I went though so many different pills and even ended up getting a heart palpitation from a blood thinner I was put on. It wasn't until I was 22 that I went back to my doctor and was set up with a "new doctor" who listened to my story and said the best and worst words of my life. "what you have is cluster headaches". I went home and looked up what she had said and was relieved to see that I wasn’t crazy. Others had banged their heads on the wall, screamed, cried, paced ect. So I started taking Imitrex shots. Those have gotten me through the years until recently. My clusters have changed seasons. Evan changed times. They are lasting for a longer stretch of time. And are killing me. Last night I had 3 separate headaches. I only took one shot, because well... that’s all I have left. I've spent over 400$ in the past week on shots and the friggin pharmacy lady is giving me a hard time on how much I’m buying. I'm at my wits end. I truly feel like I cannot take much more of this.
So, I was hoping joining a support group would help.
Thanks for listening er reading my story
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nani
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Re: I can't do this anymore
« Reply #1 on: Nov 8th, 2007, 11:06am » |
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on Nov 8th, 2007, 10:53am, naka425 wrote:
So, I was hoping joining a support group would help.
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It most definitely will help. 
Welcome naka and sorry you have to be here.
There is a lot of info here, so start reading. First, have you tried oxygen as an abortive? Much cheaper and safer than Imitrex. Read about it here:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm and here:
http://www.chhelp.org/mhni.html
Here's a list of common medications to look over and discuss with your dr:
http://www.ouch-us.org/medications/medications.htm
In the meantime, many people get relief from energy drinks that contain taurine and caffeine. Drink it quickly at the beginning of an attack.
Finally, ask lots of questions. We're here to help.
pain free wishes, nani
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naka425
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Re: I can't do this anymore
« Reply #2 on: Nov 8th, 2007, 11:12am » |
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My doctor had said most insurance companies won't cover oxygen.
I've been on so many diffrent things I'm not sure if I have tried an abortive medication. The only thing that seem to work was Imitrex. So I stuck with it.
I did just call my doctor. Crying in pain and frustration for help. Of course I can't get in till next week. But I begged for something else to ease the pain so I can make it through the weekend. He is suppose to be calling me back.
I will try the energy drinks. In fact I'd try drano if someone said it worked!!!
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cash5542
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Re: I can't do this anymore
« Reply #3 on: Nov 8th, 2007, 11:16am » |
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I was also by a doctor that o2 wasn't covered. Callyour insurance company and see what they say. Also I was very pleased with the oxygen supply centers. They seem to know how to work the system. Don't take no for an answer the first time. it took me awhile to figure it out but we did! Good luck! It's worth the effort.
Charlotte
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nani
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Re: I can't do this anymore
« Reply #4 on: Nov 8th, 2007, 11:19am » |
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Even if your insurance doesn't cover oxygen (most will if you have a letter from your dr), it's pretty cheap. Especially compared to Imitrex.
A good preventative (or two) will really help cut down on the attacks. If I were you, I'd make a list of what you have tried in the past, and see what else is available.
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Guiseppi
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Re: I can't do this anymore
« Reply #5 on: Nov 8th, 2007, 12:27pm » |
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Good morning child!!! You're where I was 25 years ago, trying to find something to make it stop hurting. I've sent an e-mail to one of our New York girls who'll be pm'ing you shortly to help you get thru the red tape.
You need to understand the 2 pronged approach you have to take to manage these things. You need to find a preventative medication. That's something you take while on cycle that reduces frequency and intensity of the headaches. I use lithium, other common prevents are verapamil and topomax. If you just keep trying to use abortives like imitrex you'll go broke fast! Most of the prevents are far cheaper.
The second prong is the abortives, #1 abortive should be oxygen. I don't understand why doctors are so hesitatnt to prescribe oxygen, but are more then happy to stuff you full of highly addictive narcotics, which as I'm sure you realize by now, do not help at all.
Hang in there, we are all here to help you and you CAN handle this.
Guiseppi
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naka425
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Re: I can't do this anymore
« Reply #6 on: Nov 8th, 2007, 1:40pm » |
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You have no idea how much this converstion alone gives me hope... Well maybe you do.
I do have a ? for everyone. Do many of you have your clusters change cycles and intesity?
Mine have been a basic Kip 9 -10 my whole life with a few Kip 6. But the first 2 months I was just having shadows nothing full blown But the last 3 weeks they have been 9-10s. Just very irregular for me.
Im ususally prepared for my cycle. But this has got me all sorts of confused.
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Guiseppi
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Re: I can't do this anymore
« Reply #7 on: Nov 8th, 2007, 1:46pm » |
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Well it's more bad news but the only really predictable thing about these is how quickly they can morph on you. You'll go pain free for 2 years for no reason, then get hit with an 8 month cycle.
You can't cure them but with the right attitude, and a doctor who'll work with you, you can certainly manage them.
Guiseppi
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Maffumatt
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Re: I can't do this anymore
« Reply #8 on: Nov 8th, 2007, 1:50pm » |
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The nature of the beast is change. HE changes all the time, what works this go around may not work next cycle, and what didn't work last time may work this time. He's a tricky bastard to be sure. For a lot of us each cycle is different and there is some evidence that some of the drugs we take may actually prolong a cycle.
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Brew
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Re: I can't do this anymore
« Reply #10 on: Nov 8th, 2007, 2:17pm » |
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Quote:
No more talk like that. You CAN do this, you have been doing it, and you will continue to do it.
You've started reading things here. Keep reading. You've reached out and many of us are reaching back.
You can do this. You are a clusterhead, and you are one of the toughest mother f*ckers on the face of the earth.
Welcome aboard. We all do what we can to help each other. At the very same time I HATE like hell that you're here, and I'm so relieved that you are.
Bill
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naka425
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Re: I can't do this anymore
« Reply #11 on: Nov 8th, 2007, 2:32pm » |
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The part thats frustrating is...( and I'm sure you know).
I'm afraid to go to sleep. When I do go to sleep HE arrives. And I go throught another sleepless night. Ive been showing up late to work several times a week. I cant afford the medicines Im on... You know the same old story. I guess I just need to grow some Kahunas and call my Insurance company and confront my Doc.
How long does it take for oxegen to relieve the pain?
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artonio7
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Re: I can't do this anymore
« Reply #12 on: Nov 8th, 2007, 2:52pm » |
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If used properly and if you start at the slightest twinge (in my case) it can abort in as little as 5 minutes. But remember it is very important that you speak to your neurologist or doctor before starting o2 therapy or any medication.
with warm regards,
Tony
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Guiseppi
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Re: I can't do this anymore
« Reply #13 on: Nov 8th, 2007, 2:56pm » |
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Since you're getting creamed right after you go to sleep, read the link on Melatonin. It is an over the counter med you can purchase at vitamin and health food stores. Many people find they can avoid the night time hits by using it. I've never tried it but many on the board say it's worked for them.
I'm with Tony, I can get completely pain free in as little as 6 minutes using 02.
Guiseppi
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Brew
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Re: I can't do this anymore
« Reply #14 on: Nov 8th, 2007, 3:27pm » |
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I, too, am in the 5-10 minute range for O2 (when I get to it as soon as I start to feel it).
As far as sleeping through the night, Guiseppi is right on the money. You need to get on a preventative. Many of them are dirt cheap - much cheaper than abortives (i.e., triptans like Imitrex). It may be awhile before you find one that works for you, so try to be patient. Talk to your doc about:
- Verapamil
- Lithium
- Prednisone (a transitional)
- Topamax
- Neruontin
- Methysergide
I know I'm leaving some out, but you should know that you haven't even scratched the surface yet. There are many alternatives and you need to have (or find) a doc who will help you figure out which one is best for you.
And keep reading (links to the left) and keep asking questions.
Bill
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naka425
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Re: I can't do this anymore
« Reply #15 on: Nov 8th, 2007, 3:30pm » |
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I do know that I have Tried Melotonin before. Unfortunitly It didnt help. It just made me more "out of it" as I danced around and searched for a cold washcloth.
My good friend sent me a link on you tube of a guy having a cluster headache.
I watched and cried and cried. Part in relief that he did EVERYTHING I do.. and part in sadness bc I know I will be facing that again tonight.
You are all amazing in all of the suggestions and how welcoming you are.
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Rosybabe
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Re: I can't do this anymore
« Reply #16 on: Nov 8th, 2007, 3:34pm » |
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Hi Naka!!
Welcome aboard!
PLease take this article to your Doc on your next visit:
http://www.plainboard.com/ch/chtherapy.pdf
Hope you find relief soon !!
Wishing you lots of pain free time!!
Rosy.
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Brew
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Re: I can't do this anymore
« Reply #17 on: Nov 8th, 2007, 4:22pm » |
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on Nov 8th, 2007, 3:30pm, naka425 wrote:| I watched and cried and cried. Part in relief that he did EVERYTHING I do.. and part in sadness bc I know I will be facing that again tonight. |
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Was it Chuck (long hair) or Tony (no hair)?
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naka425
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Re: I can't do this anymore
« Reply #18 on: Nov 8th, 2007, 4:37pm » |
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Actually I watched both of them.
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Brew
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Re: I can't do this anymore
« Reply #19 on: Nov 8th, 2007, 5:06pm » |
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It's some pretty powerful stuff. My hat is off to both of those guys for allowing themselves to be filmed while in that state.
I think the biggest challenge for you right now, naka, is getting a good neurologist who knows about treating CH. Have you checked out the list of doctors on the OUCH website yet?
Check out the links at the bottom of the following page:
http://www.ouch-us.org/chinfo1.htm
This is one of the links on that page. It's called Sufferer Recommended Doctors:
http://www.ouch-us.org/chgeneral/doctors.htm
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naka425
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Re: I can't do this anymore
« Reply #20 on: Nov 8th, 2007, 5:12pm » |
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Thank you so much. One last ? to end my day. Does anyone know of any over the counter meds I could take to get me through the weekend? Bc I cant speak to my doc untill next week.
Anything....??
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Brew
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Re: I can't do this anymore
« Reply #21 on: Nov 8th, 2007, 5:24pm » |
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Ibuprofen, energy drinks, ice packs. And, over the short term, you can take twice as much ibuprofen as they recommend. In the past, I've taken as much as 800mg every 4-6 hours. Don't do that too long, though. Through the weekend should be fine.
Understand going in that this stuff is only going to take a bit of the edge off, if that.
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naka425
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Re: I can't do this anymore
« Reply #22 on: Nov 8th, 2007, 5:43pm » |
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Thanks.... I live off showers and Ice packs during a CH. And chew Ibuprofin like skittles. ( not to good I know) But I will def try the energy drink.
What I find funny.. Well maybe not funny but amazing is that when reading some of the things people do to ease the pain. Its not like that was directed by a doctor. Its more like Human nature and when your getting a CH its instinct to get a cold wash cloth or jump into a shower. I guess im just overwhelmed with information and exstatic to have it at my fingertips!!
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nani
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Re: I can't do this anymore
« Reply #23 on: Nov 8th, 2007, 6:05pm » |
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on Nov 8th, 2007, 5:12pm, naka425 wrote:Does anyone know of any over the counter meds I could take to get me through the weekend? Bc I cant speak to my doc untill next week.
Anything....?? |
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Besides ice, energy drinks and melatonin? Well, you could try kudzu. Lots of people find it helpful.
Read all the links contained in this link:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1110584362
Then read this:
http://www.kudzubusters.com/KudzuFAQs.doc
A local herb or health food store should carry it.
And try the melatonin again. You can take between 3-12 mgs a while before bedtime.
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Brew
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Re: I can't do this anymore
« Reply #24 on: Nov 8th, 2007, 9:35pm » |
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See? I knew more folks would jump in here with tips. Even more will - you watch.
I didn't even think of kudzu because I've never tried it. Nani, you're the best!
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