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suds74
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New to the boards...
« on: Mar 3rd, 2008, 8:05pm » |
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My name is Bill and I am a CH sufferer from Dallas, TX.
I first experienced cluster headaches in 2004 or so and they were relatively mild compared to what I am experiencing right now. I hadn't had a cycle since 2004 until about the middle of February 2008, and I am still in this vicious cycle.
I went to the doctor when they first started up in mid-February and he gave me some fresh Maxalt, which I thought would work, since they helped me in the past. But not this time - the CH continued, and pretty painful at that. My doc gave me a prescripiton for Amerge and MethylPREDNIsolone on Monday the 25th, and I didnt have another headache until the 30th - which is when the MethylPREDNIsolone was finished.
Had two CH on Sunday though, and one this morning - which has left a dull pain all day - the first time that has happened.
My symptons are typical of what I have read on the boards so far - excruciating pain behind my left eye (and always the same eye), droopy eyelid, tearing in my left eye, stuffy nose, and did I mention the excruciating pain 
My fiance also tells me that my left ear turns real red right around the time the headaches start...but I have never really noticed this.
I am heading to the neurologist on Wednesday for another opinion and we will go from there.
Thanks for reading!
Bill S.
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Ray
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Re: New to the boards...
« Reply #1 on: Mar 3rd, 2008, 8:19pm » |
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Dear Bill:
Sorry for your pain, but I think you've found the best place to commiserate and to learn.
On some of the screens on this website, there are links to the left. One of them is about oxygen use. High flow Oxygen and a NON-rebreather mask (the kind with a bag) is successful in aborting most attacks quickly for about 70% of us. Please read up and consider asking/demanding this.
The pred taper is a temporary fix. Usually it is used to allow other medications like, for example, verapamil or lithium to get up to theraputic levels in your bloodstream.
The only medications other than predinisolone that you've mentioned are "abortive treatments". Most, but not all, of those who use this class of medications use Imitrex injections because they are quick!
Others use energy drinks, such as redbull, that contain caffeine and taurene, at the first hint of an attack. Many are successful to abort an attack that way.
Please feel free to read, read, read, and ask questions.
Wishing you well,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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http://www.shadesgarden.com
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Brew
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Re: New to the boards...
« Reply #2 on: Mar 3rd, 2008, 8:36pm » |
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Get a prescription for high-flow oxygen (15+ liters per minute) through a non-rebreather mask as needed for cluster headache.
(Take this wording to your doc.)
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Always remember that you're unique, just like everyone else.
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coach_bill
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gimmie my imitrex!!
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Re: New to the boards...
« Reply #3 on: Mar 3rd, 2008, 8:36pm » |
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hello there, im bill too. sorry to hear your back in the ring again but you found the right place, yep all those things sound common to clusters so your not alone, stick around and read, also share your thoughts and exp. you will see many of us go thourgh the same things. feel better soon.. coach bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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suds74
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Re: New to the boards...
« Reply #4 on: Mar 3rd, 2008, 8:36pm » |
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Thanks for the info Ray!
I plan on spending alot of time on this site, and I appreciate your help!
I am sure I will have a ton of questions.
I am getting married this week, and expecting a baby in July - a little out of order I know but I want to get this under control as much as possible so I can be a good husband and a good father.
Thanks, Bill
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DennisM1045
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Re: New to the boards...
« Reply #5 on: Mar 3rd, 2008, 8:44pm » |
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Welcome to your new home!
Don't worry. You will find what works for you with some experiementation. Many people find a way to fight the beast and have a life too. You just learn to live between the hits.
Here are two documents that lay out the latest in treatments:
http://www.plainboard.com/ch/chtherapy.pdf
http://www.efns.org/files/guideline_49.pdf
Also check out the O2 info at OUCH-US here:
http://www.ouch-us.org/medications/oxygen/o2links.htm
Oxygen has changed my life. I don't go anywhere without it. It lets me kill the pain quickly and move on with my life.
Read up and ask a lot of questions...
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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suds74
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Re: New to the boards...
« Reply #6 on: Mar 3rd, 2008, 8:44pm » |
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It is nice to see a community willing to help one another, and I thank everyone for their help and support!
Looks like Oxygen is going to be high on my list at my next dr. visit
~Bill
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Brew
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Re: New to the boards...
« Reply #7 on: Mar 3rd, 2008, 8:47pm » |
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Let's get one thing straight, Bill - you can be a clusterhead and a good husband and good father all at the same time.
In addition to the abortive treatments, you need to talk to your doc about longer-term preventative treatments. A number of folks here use verapamil, lithium, or a combination of the two. I use lithium myself, and I also use methysergide (Sansert). Some use Topomax. Read (and print) the info on the "medical info" link to the upper left. Talk to your doc about all of these preventative therapies.
You are amongst people who understand. You didn't ask for this, so you can be the one who decides whether you're going to rule it or it's going to rule you.
Another Bill
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PollyPocket
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Re: New to the boards...
« Reply #8 on: Mar 3rd, 2008, 8:59pm » |
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Hi Bill, welcome.
One comment that really should be burned on your brain is that you need to learn to live between the hits. CH sux big time, but it doesn't have to rule your life.
Congrats on the upcoming nuptuals! Bring the bride and mom-to-be here so we can get to know her, and she can get the support she will need to help you all deal with this. Our supporters here are amazing people.
o2 is a godsend and for me kicked the beast back in a little under 10 mins. (Wish I'd have done it years ago!). Verapamil was a great preventative too, knockng the hits down a bit and shortened the cycle. Pred was the same for me as you: worked till it was gone then WHAM. Definitely ask your doc about different preventatives to try.
Also, in a pinch, some of us do well with ice packs, or heat applied directly to the affected side or high test caffeine drinks like redbull slammed at the onset. (personally I think redbull tastes like butt but others stomach it quite well)
You've come to the right place, both you and your honey, to find support and understanding and a lot of knowledge from years of dealing with CH.
Again, welcome
Jen (who is not another Bill)
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened.  " - Tori
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GrandPotentate
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mmmmmmmmmm
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Re: New to the boards...
« Reply #9 on: Mar 3rd, 2008, 9:20pm » |
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I'm glad you found us, sorry you had to come looking. Get yourself a good long list of questions and work it out with the doctor. He needs to eliminate a couple other things. Your job is to convey the urgency.
I stayed away from oxygen for quite awhile because it sounded like a bother. Boy was that stupid! A doc got me a prescription, and I was astonished at the effectiveness for me (your mileage may vary)
Hope you find some good relief as well.
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Jon
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suds74
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Re: New to the boards...
« Reply #10 on: Mar 3rd, 2008, 9:32pm » |
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Just wondering if you guys are "drained physically" after some of your attacks?
A few of the bad ones lately have left me extremely tired, and the lack of sleep overall doesn't help either!
Thanks again to everyone for their help!
~Bill
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Superdave
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Re: New to the boards...
« Reply #11 on: Mar 3rd, 2008, 9:35pm » |
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Welcome Bill,
I'm just a baby on this site been here only a month or so.
Brew crew and the others have really helped get my *&(^ in order. I've been to many Neuroligist and Doctors before I was properly diagnosed. Just make sure they listen to what you have to say, or find another one.
Its a great place to be in a bad time! 
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Wow! you mean it's just in my head?
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Linda_Howell
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Hearing is one thing. Listening is another.
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Re: New to the boards...
« Reply #12 on: Mar 3rd, 2008, 9:41pm » |
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Hey Bill, Check out the OUCH board...our next convention is in Dallas.
Upcoming Events
What Where When Contact
9th Annual OUCH Convention Dallas, Texas July 11-13, 2008
convention@ouch-us.org
Since you live there you have no excuse to come and meet the mopst wonderful people in the world who will sit you down and explain anything and everything you ask. O.K.?>
Linda
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| « Last Edit: Mar 3rd, 2008, 9:43pm by Linda_Howell » |
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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George_J
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Re: New to the boards...
« Reply #13 on: Mar 3rd, 2008, 9:49pm » |
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on Mar 3rd, 2008, 9:32pm, suds74 wrote:| Just wondering if you guys are "drained physically" after some of your attacks? |
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The bad ones that aren't aborted--yes. All of them. The thing takes a lot out of a person.
Glad to meet you, aside from the fact that it's because of....you know what. Let us know how your doctor responds to your request for oxygen. Some doctors display an almost irrational unwillingness to prescribe it.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Superdave
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Re: New to the boards...
« Reply #14 on: Mar 3rd, 2008, 10:33pm » |
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Yes Bill, bad hits suck the life right out of me
Thats why I try to eat healthy foods drink a lot of water
and stay in shape
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Wow! you mean it's just in my head?
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darknight
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Re: New to the boards...
« Reply #15 on: Mar 4th, 2008, 5:27am » |
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Hi Bill,
As you can see everyone is here to help as best they can by drawing on there own experiences. I myself have just recently started with Oxygen thanks to this site and it works wonders and helped me gain control of my life again but not everyone will agree but would advise you to at least try it first!!
Hope you get control and good luck with your wedding and soon to be little one!!
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suds74
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Re: New to the boards...
« Reply #16 on: Mar 4th, 2008, 3:56pm » |
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on Mar 3rd, 2008, 9:41pm, Linda_Howell wrote:
Hey Bill, Check out the OUCH board...our next convention is in Dallas.
Upcoming Events
What Where When Contact
9th Annual OUCH Convention Dallas, Texas July 11-13, 2008
convention@ouch-us.org
Since you live there you have no excuse to come and meet the mopst wonderful people in the world who will sit you down and explain anything and everything you ask. O.K.?>
Linda
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Sounds great - would love to meet everyone there!
~Bill
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suds74
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Re: New to the boards...
« Reply #17 on: Mar 4th, 2008, 3:57pm » |
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on Mar 3rd, 2008, 9:49pm, George_J wrote:
The bad ones that aren't aborted--yes. All of them. The thing takes a lot out of a person.
Glad to meet you, aside from the fact that it's because of....you know what. Let us know how your doctor responds to your request for oxygen. Some doctors display an almost irrational unwillingness to prescribe it.
Best wishes,
George
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Thanks for the info...I am just amazed at how tired I am after a CH. I unfortunately had one during a lunch meeting today, and had to step out for a while because of the pain, and now I am drained! Guess I need a Red Bull!
~Bill
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suds74
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Re: New to the boards...
« Reply #18 on: Mar 4th, 2008, 3:59pm » |
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on Mar 3rd, 2008, 10:33pm, Superdave wrote: Yes Bill, bad hits suck the life right out of me
Thats why I try to eat healthy foods drink a lot of water
and stay in shape |
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I drink alot of water each day, and when I don't have a CH, I ride my NordicTrack bike each night for about 20 minutes...but it hasn't happened much lately due to the frequency of headaches...but I plan on jumping on it again real soon
Thanks, Bill
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Brew
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Re: New to the boards...
« Reply #19 on: Mar 4th, 2008, 4:12pm » |
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Have you ever had a sleep study done? I had one done in 2001, was diagnosed with severe sleep apnea, and have been on CPAP therapy ever since. It hasn't affected the CH, but it sure is nice being well rested when you have to battle the beast.
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RichardN
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Re: New to the boards...
« Reply #20 on: Mar 4th, 2008, 5:21pm » |
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Hi and Welcome
Another vote for 02 here. Make SURE you copy the 02 info and take it with you to your doc. Many docs are reluctant to prescribe oxygen and need to be convinced. Also, don't be dissuaded because "your insurance doesn't cover it". Even if your ins co. won't pay, 02 is CHEAP even if you have to pay cash.
It was Verapamil that worked for me as preventative.
Start a headache journal today. Note the time, duration, pain level (use "the kip scale" . . .link on left), and take the journal and a copy of the Kip scale with you when you next see your doc.
One of my favorite motto's on this board is, "Nothing works for everyone, but SOMETHING works for everyone" . . . and here you have a very good chance of finding the "something" that works for you.
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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suds74
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Re: New to the boards...
« Reply #21 on: Mar 4th, 2008, 5:23pm » |
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on Mar 4th, 2008, 5:21pm, RichardN wrote:Hi and Welcome
Another vote for 02 here. Make SURE you copy the 02 info and take it with you to your doc. Many docs are reluctant to prescribe oxygen and need to be convinced. Also, don't be dissuaded because "your insurance doesn't cover it". Even if your ins co. won't pay, 02 is CHEAP even if you have to pay cash.
It was Verapamil that worked for me as preventative.
Start a headache journal today. Note the time, duration, pain level (use "the kip scale" . . .link on left), and take the journal and a copy of the Kip scale with you when you next see your doc.
One of my favorite motto's on this board is, "Nothing works for everyone, but SOMETHING works for everyone" . . . and here you have a very good chance of finding the "something" that works for you.
Be Safe, PFDANs
Richard |
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I do have a headache spreadsheet that goes back to my first headache in mid-February - and I plan on sharing this with the doc tomorrow, as well as insisting on some O2 as well
Thanks, Bill
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suds74
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Re: New to the boards...
« Reply #22 on: Mar 4th, 2008, 8:56pm » |
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Several of you have mentioned preventative drugs - how long do you guys take those? Is that a permanent thing?
Thx, Bill
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Ray
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Re: New to the boards...
« Reply #23 on: Mar 4th, 2008, 9:11pm » |
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I don't think there's a universal "yes or no" answer to that question. I'm chronic, so if there were a drug cocktail that would work for me, I would be on them year round. I'll defer to other episodic clusterheads to answer you.
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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http://www.shadesgarden.com
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BarbaraD
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Re: New to the boards...
« Reply #24 on: Mar 5th, 2008, 7:01am » |
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You might try melatonin at night to get the sleep you need. It helps a lot of us get thru the night hits. I've been on it for years and swear by it. I take 12-15mg before bed and very seldom have a night hit.
And yes, the exhaustion goes with the hits. That's normal (if anything is normal with these darn things). Keep some Red Bull handy and chug-a-lug a can at the first sign of a headache. It will sometimes keep it away - till the next one. Then repeat it.... Coffee is also good. I bounce off walls a lot, but it beats the pain of CH.
Get your bride on this site and let her meet some of the other supporters. They're great people. And plan on coming to convention. You'll love us all I promise. No one ever wants to go home.
Welcome to Clusterville.
Hugs BD
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What don't kill ya, Makes ya stonger!
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