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ashleyk233

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help me
Sep 22^nd, 2008 at 8:54pm

Ive spent the past few days in worst pain then ive ever imagined. im in a great dealo right now. It started thurs (it'[s now mon night), i have been to two seperate hospitals. ive had a spinal tap, labs, xrays ct scan of the brain... and nothing. The doctor sais u might have cluster headaches, you can go home now. It feels like a death sentence. I cant deal with this. this is the first one and it wont go away. When i finally do pass out from all the meds they pumped into my ivm, I wake shortly after begging for more. I beg my husband for it all to be over. Its funny because the first day or two he thought i was faking it a little bit, but when im screamin for more morphine and that doesnt even help, i think he knows its for real now.

PLease tell me how am I supposed to function like a normal person and go to work with this??

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CH-HELL

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Re: help me
Reply #1 - Sep 22^nd, 2008 at 9:17pm

Hi Ashley, Sorry to hear about you pian I am fairly new to this site but I have suffered with Ch's for over 15 years. youv'e come to the right spot there are many people hear who will have better info than myself, all I can tell you is hang in there and find a good neuro so you can get the correct meds narcotics are not your best option but if thats all they gave you I understand. You need to get some thing that will help more than morphine a good abortive like o2 and imitrex and a good preventive like verapimil, there alot of other meds and I'm sure others that are smarter than I that will give you advise. Hang in ther your not alone. Phil

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Jonny Ex Member	Re: help me Reply #2 - Sep 22^nd, 2008 at 9:22pm ashleyk233 wrote on Sep 22^nd, 2008 at 8:54pm: PLease tell me how am I supposed to function like a normal person and go to work with this?? Pain management!....Keep reading!
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mezza

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Re: help me
Reply #3 - Sep 22^nd, 2008 at 9:58pm

Hi Ashley

welcome- you certainly have come to right place. Jonny is right when he says keep reading. Read everything you can on these boards. There are treatments out there to help you abort the headaches - some provide for some people pain relief within 5-10 minutes. Many folks use Oxygen at a high flow rate to abort headaches others use the triptans. Many use both. We stock our arsenals. Many folks take prescribed medications to help stop the cycle, others use techniques listed on the clusterbusters website.

You need to get to the right doctor that can help you understand what is going on - Many of us here have been to doctors and have been misdiagnosed but through reading and the support of fellow CHeads have gotten much needed relief. I found my current neurologist on the OUCH website ( see link on left) He gets it and came recommended by a person on this site.

In a pinch, guzzling a red bull at the first sign of a headaches has aborted a HA many a time for me. Also downing a couple cups of black strong coffee has provided necessary relief for me. Melantonin (over the counter) has helped many skip the night time hits and can provide a good nights sleep. You probably know how precious that can be- Wink

One of the best things that this site can provide is hope - we've all been there- CH suck but they don't have to rule your life. You can get the right help and relief from your pain. Read , Read and do some more reading after that. You will have to arm yourself with this information to take to the doctor.

And yes- working while in cycle sucks. I totally understand and can relate. I work full time, I am an administrator at a large school district which requires me to be on top of my game and have 2 young kids that I cart around after work to soccer practices, games , guitar lessons etc. The key for me was getting the right treatment so that I could function and maintain the status quo.

I am so sorry you are suffering Sad

Others will be along to help you and provide support. Hang in there and don't give up

Kelly

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« Last Edit: Sep 22^nd, 2008 at 10:00pm by mezza »

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: help me Reply #4 - Sep 22^nd, 2008 at 10:22pm Quote: It feels like a death sentence. It is not. Linda, who hopes you'll keep reading here.
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ashleyk233 CH.com Newbie Offline I Love CH.com! Posts: 2	Re: help me Reply #5 - Sep 22^nd, 2008 at 10:52pm thank you for your comments, i will keep reading
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DennisM1045

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One wave at a time!

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Haverhill, Massachusetts, USA
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Re: help me
Reply #6 - Sep 22^nd, 2008 at 10:56pm

Welcome Asley! I'm happy you found us so quickly. I didn't find this little oasis for 12 years. I know you don't feel lucky right now, but in a way, you really are.

Like others have said, there are ways to abort these attacks quickly. There are conventional and non-conventional medications available to keep them at bay. There are ways to live your life, love your family and hold down a job. However it does take a plan of attack.

Everyone is unique in what works for them. Read everything here and you'll be able to find your magic combination.

First things first though... And that first step is finding a neurologist or headache specialist versed in clusters to guide you on your way. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

is a good place to start learning too.

Good luck and let us know how we can help.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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George

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Boise, Idaho USA
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Re: help me
Reply #7 - Sep 23^rd, 2008 at 1:03am

ashleyk233 wrote on Sep 22^nd, 2008 at 8:54pm:

It feels like a death sentence. I cant deal with this.

But you can.

Linda's right--keep reading. I know how frightening this can be--but you are no longer alone with it.

Feel free to PM me (or any one of us). We'll be happy to talk to you. You CAN get through this. Welcome home.

All the best,

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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BarbaraD

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Hugs to ya

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Douglasville, TX
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Re: help me
Reply #8 - Sep 23^rd, 2008 at 8:04am

Being alone with this is one of the worst parts. But now that you've found US - you don't have that problem any more. When we say we UNDERSTAND you can bet we do, cause everyone of us have been right where you are now.

And yes, most of go to work every day with these things. I've been chronic since 1997 and still work, interfer in the raising of my 6 year old grandchild every chance I get and run a farm and keep up with gossip in the county and still find time to play politics, so it can be done. And right now I'm getting hit several times a day.

Narcotics are NOT good for CH - they just don't help. Might as well drink a glass of water.

Get to a good headache doc (interview him/her and make sure they know what a CH is). In the meantime get some RED BULL or another energy drink (make sure it has caffeine and at least 1000mg of taurine in it) and chug it at the first sign of the headache.

Black coffee (several cups) will sometimes abort one if you get to it at the start.

Melatonin before bedtime helps a lot of us get thru the night without getting hit so we get the rest we need at night.

Most of us swear by O2 (high flow rate - at lest 15 liters per minute with a NON REBREATHER mask). 25 liters per minute is better.

As Linda said -- READ READ READ. There's a world of information on this site....

Hugs BD

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What don't kill ya, Makes ya stronger!

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Jeannie

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Live, Laugh, Love....

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St Louis, Missouri
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Re: help me
Reply #9 - Sep 23^rd, 2008 at 9:06am

Welcome Ashley,

You have already been given some good advice. As said before, read all that you can. This place is full of your BEST weapon...... KNOWLEDGE! You can fight CH and WIN! We're here to help you. I have had CH since I was 10. I too am a productive human that works and helps provide for my family. Find a good doctor and get ready to get on with the rest of your life. You can do it! Hang in there, honey!

Hugs,

Jeannie

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"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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Guiseppi

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Re: help me
Reply #10 - Sep 23^rd, 2008 at 10:32am

Welcome home Ashley...I hope to hell you don't have CH, if you do, don't lose this site. I'm male, 48, with a beautiful wife of 26 years and two grown daughters. I am a sergeant with a big sheriff's department in Southern California, I accomplished all of that in spite of dealing with CH for the last 30 years. CH is a pain in the ass, extremely annoying, somewhat disruptive to your life, but by no means a death sentence.

What Johnny means by pain management is don't sit in bed waiting for an attack, then pop a pill and hope the pain will stop. It doesn't work for CH.

1: You will need a preventative regimen. A medication you will take daily to reduce the frequency and the intensity of your attacks. I use lithium, theres also verapamil, topomax, and many others to read about on the med page. I am not advocating one or the other, we're all different and it's critical you work with your doc to figure which works best for you.

2: You will need an abortive strategy. A headache is starting, now what? Your first line of defense should be oxygen. I can abort an attack in as little as 6 minutes, that's completely pain free, using just oxygen. Imitrex injectables work really well but I hate how they make me feel. There ia also imitrex nasal spray which I haven't tried but many on the board rave about. Many others for you to read about and discuss with your doc.

You've probably already figured out the pain meds don't help much, and their long term side effects are pretty bad. This is a rare condition so most doc's don't know much about it. It's your responsibility to educate yourself and work with your doc in developing an effective pai management routine. We'll help you, we promise. Hang in there.

Guiseppi

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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