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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> 'Ello!
        
(Message started by: Spartan1128 on Nov 11^th, 2007, 7:10pm)

Title: 'Ello!
Post by Spartan1128 on Nov 11^th, 2007, 7:10pm

Hi all!

My name is Davis. I've been told quite a lot about this place... A very, very dear friend of mine (Raikana) has been on here as support for me. I am 17 years old and I currently suffer from (what I believe almost 100% to be) cluster headaches. They only seem to happen between November-ish to June-ish. They usually happen every morning between 8:00 and 10:30 ish. This is my third year having them. The past two years were not very painful at all. But this year they have been VERY painful. They occur just barely above my left eye. It's a sharp stabbing pain coupled with a dull ache. I'm usually incapacitated while they are happening... This year they've lasted for about 2 hours.

Anyways, I look forward to getting to know everyone!

Title: Re: 'Ello!
Post by Raikana on Nov 11^th, 2007, 7:22pm

-_- As people will come to learn, he doesn't use specific terms very well. Allow me to clarify. ^_^

For the last two cycles hits would come every two or three days, not getting up above 5Kip, from what he's told me. They also lasted only 15 - 30 minutes. He's been calling them migraines, and his doctor thinks they may possibly be related to food allergies... Which I'm not buying. I've read too much about CH that lines up with what Spartan has told me.

This cycle, Spartan's hits have been coming every day. Usually being around 6 or 7 Kip. One I think may have been up to 8 Kip. He's been put on an elimination diet, but is ignoring that to take Excedrin when he feels a hit coming, and to drink a can of Coke. He's gotten up to three hits a day, now, but using Caffeine as an abortive keeps them short. 10 minutes... ish.

He's had a CT Scan, and nothing was there that shouldn't be... apparently he's missing two arteries (is that right? I'm a little foggy on the details of that one, Spartan.) in his brain. O_o But the docs said that shouldn't be the problem... *doesn't look entirely convinced* He's had all manner of physical tests done, and has been declared perfectly healthy, with no cause for headaches like this directly evident. I think he's going to a neurologist in a little over a week.

^_^ Sorry Spartan... You were being maddeningly vague.

~Megan

Title: Re: 'Ello!
Post by ski2k on Nov 11^th, 2007, 7:23pm

Hey there, Spartan! Welcome to the nut house!! ;)
The more you can tell us about what your headaches are like, and what you've done to get rid of them, the more we can help!
Do you take any meds for them? Have you tried ice packs, or hot washcloths? Does caffeine seem to make a difference?
Let us know a bit more, and we'll start pointing you in the right direction, so maybe you can beat these things!

Look forward to hearing from you,
Adam

Title: Re: 'Ello!
Post by Spartan1128 on Nov 11^th, 2007, 7:25pm

Lol I'm sorry... I'll learn the terms eventually... At first I was like what the heck is Kip?!? but now I know ^_^.

The headaches I get usually get to 7 or 8 Kip actually... And what Raikana says is all true. They did find that I am missing two arteries in my brain yes. But again they say that if it hasn't caused a problem yet then it won't... but if it does cause a problem then there is nothing they can do about it x_x.

Title: Re: 'Ello!
Post by Spartan1128 on Nov 11^th, 2007, 7:29pm

Currently I only take 2 Excedrin when I feel them coming on... It's starts out feeling like pressure building up and gets worse and worse until it gets to sharp stabbing pains. I have tried putting a steaming hot rag on the eye... Didn't do anything but get my face wet -_-. Caffein seems to work great... The headache usually leaves after about 10 minutes of drinking coffea or coke.

I'm open to whatever questions you may have... anybody. I don't always know what I need to say... A lot of the times it takes someone asking me a question for me to say it.

Title: Re: 'Ello!
Post by ski2k on Nov 11^th, 2007, 7:29pm

Thanks for clarifying things a bit, Megan. If excedrine and coke seem to be helping, Try a red bull, Monster, or other energy dring with TAURINE and CAFFEINE in them. Those seem to knock the beast right out if you drink them down quickly at the first sign of a headache coming on.
Any other meds Spartan's on? Has O2 been tried? How 'bout any preventatives, such as Topomax or Verapamil?
Hope the neuro appt can get some more questions answered. In the mean time, I HIGHLY recommend trying the energy drink trick. It works for a lot of us.

Best,
Adam

Title: Re: 'Ello!
Post by Raikana on Nov 11^th, 2007, 7:34pm

He hasn't been diagnosed with CH yet. The doctors in our area are... maddeningly unhelpful. x_x I've threatened Spartan with tagging along to a Dr. appointment to see if I can talk to the Docs. If I have to make them listen to me with a sledgehammer, I think I'll try. ^_^

Anyway... since he hasn't been diagnosed a lot of meds will be unavailable for him to try. Right now, Coke and Excedrin seem to be working.

Title: Re: 'Ello!
Post by ski2k on Nov 11^th, 2007, 7:40pm

Might not be a bad idea to go along to a doc appt or two with him, Megan. Sometimes it's good to bring someone along to point out things he may have forgotten about.
Sounds like you have a great supporter there, Davis! Listen to her, and let her help you out. It makes it sooo much more bearable if you have someone there to give you a hand!

Adam

Title: Re: 'Ello!
Post by Spartan1128 on Nov 11^th, 2007, 7:44pm

She is wonderful! I know I would be in the dumps if it wasn't for her! And I definantly wouldn't know much about CH's or this place. THANK YOU MEGAN!

Title: Re: 'Ello!
Post by Raikana on Nov 11^th, 2007, 8:12pm

I'm thinking about tagging along one of these days. Especially if, after the next visit, the Doc doesn't seem like he's researched CH at all.

^_^ You're very welcome! Anything I can do to help!

Title: Re: 'Ello!
Post by Kevin_M on Nov 11^th, 2007, 8:24pm

I can only add, don't stand still with this. Clusters will need some correct attention. Keep a headache log in preparation, a diagnosis is important. If those higher kips continue regularly, there will be quite a lone and focused desire for treatment.

Title: Re: 'Ello!
Post by Linda_Howell on Nov 11^th, 2007, 8:27pm

Megan,

If Spartan is only 17 he really does need to have some sort of advocate with him in this. (when I was 17 I couldn't have even written as clearly as he is right now) Do you live close to him?

I don't mean to be talking about you on your own thread here Spartan, but I felt it was necessary.

Please forget the excedrin. It will chew up your stomach and it won't even come close to helping. I'd rather see you try the energy drinks with caffeine and Taurine in them or strong coffee. Ice or heat packs and sit in front of an a/c/ unit and breathe the air in short, almost hyperventilating breaths.

Before you see any Dr. you must really be informed, otherwise your visit will no doubt leave you more confused than ever. Lots of Dr.s haven't got a clue about CH...so you MUST.

There is a wealth of information here:

http://www.ouch-us.org/index.shtml

I hope you will feel free to ask questions here of any of us. We're here to help you sort through the maze..

Linda Howell

Title: Re: 'Ello!
Post by Raikana on Nov 11^th, 2007, 8:49pm

^_^ I'll definitely be his advocate. I've been told that I'll need to fight for this, and I'm more than willing to.

I wish I lived closer... He lives about a half hour away from me. Which is better than the 45 - 60 minutes that he lives away from everything else... ^_^ He lives out on the edge of nowhere.

Title: Re: 'Ello!
Post by Spartan1128 on Nov 11^th, 2007, 9:15pm

Lol don't worry about offending me ^_^. This forum is about me so you can ask or discuss anything... I personally don't care.

Ok, I guess I'll forget the excedrin... Caffeine it is then. I'd figured that's what was helping... But I also wonder if too much caffeine will trigger more headaches? Are there any side effects in general?

Title: Re: 'Ello!
Post by ski2k on Nov 11^th, 2007, 9:22pm

Caffeine has been shown to trigger migraines in some people who get them. Cluster headaches are different. And again... If coke is workin' for ya... Gice an energy drink with Taurine and caffeine in it a try. I think You'll be surprised at how well that works!

Adam

Title: Re: 'Ello!
Post by Linda_Howell on Nov 11^th, 2007, 9:28pm

Megan: Thank you for being his advocate. As a supporter...and that is what you are my friend...you are crucial, and you matter and all of us who suffer, thank you and all other supporters from the bottom of our hearts. Sometimes we cannot think straight...supporters do that for us.

Spartan:

Caffeine will not trigger more headaches. Alcohol will , but not caffeine.
You see what happens is during a cluster headache all the blood vessels around our brain swell up. Up to 20 times their normal size. A vasoconstricter is what we need to get those vessels down to the normal size. Oxygen does that. Caffeine does that. Lots of the drugs we take like Imitrex does that.

Side effects from coffee????? The least of your problems son...lmao

Linda

Title: Re: 'Ello!
Post by Spartan1128 on Nov 11^th, 2007, 9:35pm

Aha... Yeah makes sense. Lol well I've been surprised about side effects from some foods so just thought I'd ask :P

Title: Re: 'Ello!
Post by Raikana on Nov 11^th, 2007, 9:36pm

I think the only side effect, really, is getting addicted. And that's really the least of your worries right now.

Title: Re: 'Ello!
Post by Linda_Howell on Nov 11^th, 2007, 9:38pm

well keep asking. The more you ask, the more you'll know. The more you know the more you'll be in control. The more in control....the less pain.

Linda

Title: Re: 'Ello!
Post by tessistired on Nov 11^th, 2007, 9:42pm

Hey there Spartan! My name is Tess and i am from Michigan. I just wanted to put a message in and say hello because I am new also. Been here for I think 3 days now and the amout of support and information and encouragement is amazing and I am so thankful for these people. You will make so many friends and learn so much. I already have in just the short amount of time I have been here. So dont ever be afraid to ask anything. I have had my cluster for 6 years and have been on preventative meds that have not yet worked. Currently I am on topomax, propranolol and just started lithium. So I am praying that works. My lovely demons are chronic and I have been trying to get oxygen but cant find a place to supply it to me that accepts my insurance so keep your fingers crossed for me. I pray all works out for you at your doctors apts.

Talk to you soon!
]
Tess

Title: Re: 'Ello!
Post by Spartan1128 on Nov 11^th, 2007, 9:44pm

Indeed. Thanks for the openness of you all ^_^ course I guess that's what this place is for ^_^. If I think of anything I'll be sure to ask.

Title: Re: 'Ello!
Post by Linda_Howell on Nov 11^th, 2007, 10:32pm

and if you're as smart as I think...you'll ask a lot. ;)

Title: Re: 'Ello!
Post by Spartan1128 on Nov 11^th, 2007, 10:56pm

lol We'll see then ;;D oh look I found some...

My cycle seems to start and end around the solstices... So my cycle starts in November and ends around June-ish... I've read that CH has a lot to do with your internal clock... Anybody else have this or is this just coincidence?

Does physical activity aggrivate CH's? How about stress? Or a lot of deep thinking?

I was taking a pill called "Doxycycline" for acne... My cycle started just a few days after taking the first pill. The pills are pretty potent... More powerful than Tetracycline. I used to take Tetracycline for the same reason last year... and I think the year before that. I've read that these pills can cause severe headaches... Would they start a CH cycle, make them worse or mabye not anything at all?

Seems I had a rash of questions ;;D Well, you said ask so I asked ^_^.

Title: Re: 'Ello!
Post by Linda_Howell on Nov 11^th, 2007, 11:22pm

As if...you could trip us up. ;)

Quote:

My cycle seems to start and end around the solstices... So my cycle starts in November and ends around June-ish... I've read that CH has a lot to do with your internal clock... Anybody else have this or is this just coincidence?

Nope not at all. Almost all episodics report this Spring/Fall. Hence...the name CLUSTER. They occur in clusters.

Quote:

Does physical activity aggrivate CH's? How about stress? Or a lot of deep thinking?

Physical activity may increase CH in some, where-as most concur that it's AFTER the activity, when they start breathing more shallowly and relax....that they get hit. Stress is a trigger for some. Not so for others.

Deep thinking? Now that would be a question for the intelligent around here. Potter? Bob Johnson may see this and reply.

Quote:

"Doxycycline"

Gotta look that one up. Be right back.

Back...this is an antibiotic and as such...probably has NOTHING to do with CH. Mind you now. No One here is a doctor. We are here to give you guide-lines and information that we know. That said...I'd almost bet Don's tiara, (private joke sorry, I coun't resist) that this antibiotic has nothing to do at all with your headaches.

You said that you read that Tetracycline can cause severe headaches. So can a lot of drugs...but Cluster headaches are a whole entity unto themselves that are caused by a deformed Hypothalmus gland and NOT by any drug or medication.

By the way..if Megan is your girlfriend, then you are one lucky guy. Not everyone your age who suffers with this, is as fortunate as you seem to be, to have someone to research here and ask questions. Most girls (and guys ) your age would say..."I'm outta here" shallow creatures that they are.. :-/

Linda

Title: Re: 'Ello!
Post by George_J on Nov 12^th, 2007, 1:15am

Hello, Spartan,

We've heard a lot about you from your supporter, Megan, and I'd like to welcome you both to Clusterville.

Although I'm quite a bit older than you, I started with CH when I was thirteen--so I suppose I know a bit about what you're going through. Sounds as if the two of you are very much on the right track toward a diagnosis and proper treatment--it's difficult to add much to the good advice you've been given thusfar.

Anyway if either of you would like to contact someone here who is about your same age, please feel free to PM one of my two best supporters--my daughter, Ellen. She's also seventeen. I'm sure she'd be happy to hear from you.

Her screen name here is Changeling_J .

Best wishes--and again, welcome.

George

Title: Re: 'Ello!
Post by Spartan1128 on Nov 12^th, 2007, 9:36am

Ok thanks for the answers!

Oh yes... I know I'm more than fortunant to have her... not only as a friend but a little more :) We're a bit more... serious... than most kids our age. But at any rate, she's great!

Title: Re: 'Ello!
Post by Spartan1128 on Nov 12^th, 2007, 9:48am

Oh here's another question. Does looking at a computer screen trigger/make CH worse? I've read that for most people there isn't much if anything that actually triggers them... But it just begs to ask ;)

Title: Re: 'Ello!
Post by Raikana on Nov 12^th, 2007, 9:51am

I've thought of another question, too...

Spartan works at his family's quail farm. Would that be any cause for headaches?

I don't think so. If it were, he'd get them in the Summer when he does most of his work. Not the winter. And it would have become evident a LOT sooner. But... I just had to ask.

Title: Re: 'Ello!
Post by sldrswyfe on Nov 12^th, 2007, 10:14am

Welcome Spartan.

You are at the best place possible for a diagnosis of CH. By finding this site you have saved yourself a long, long(and frustrating) journey many of us have made through trial and error for years. I didn't get here unitil I had already tried every possible treatment for CH.

Still...I learn so much here. Just by reading other's questons...and experiences.

Until yesterday, I didn't understand that when drinking Red Bull, it has to be guzzled down at the first twinges of a hit.

I have only once tried a Red Bull..and was just drinking it slowlly...therefore it wasn't effective...I thought, "Ok, this tastes like alka seltzer with a tart citrus(?) flavor..it's doing nothing for my pain", etc.

My point is there is so much you will find out by reading here...please, read, read and read. Don't stop trying until you find YOUR effective treatment. Best of Luck, Sherri

Title: Re: 'Ello!
Post by kcopelin on Nov 12^th, 2007, 10:17am

So glad y'all found us! Never heard of quail farming being a trigger-but I know that if I do alot of physical stuff involving my neck muscles it makes things worse. Since your cycles aren't lined up with the quail thing, I doubt that's it.
1. keep a headaches diary/log.
2. Print everything you can from the OUCH website about CH symptoms, treatments, medications. I have a binder with CH info in it.
3. Take the above with you to your doctor.
4. Take Raikana with you as well.
5. Best practices: transitional medication (such as prednisone taper), preventative meds (such as verapamil), and abortive (oxygen high flow non-rebreather mask, or imitrex).

Hang in there and keep the faith. CH will not kill you, but it is the most excruciating pain known.
Personally I hope you don't have them, but if you do you are in the right place.

Prayers for you both,
PFDAN y'all
kathy

Title: Re: 'Ello!
Post by DennisM1045 on Nov 12^th, 2007, 11:39am

Hi Spartan! I'm happy to see you found your way here. Welcome home son ;;D

That Megan of yours is pretty amazing. We exchanged a few posts on the supporter board. So I was relived to see you finally register with us yourself.

The most important thing you can do (besides grabing a few Red Bulls like Adam said) is to get your Doctors to listen, read and refer you to a Neurologist that can properly diagnosis and deal with CH. They've wasted enough of your time already from the sounds of it.

Anyway, I am episodic. Have had clusters for 12 years. They come twice a year in the late winter/early spring and at the end of the summer. So they are very much seasonal for me.

I am a software engineer and spend a lot of time "deep thinking" and on the computer. Both can trigger a CH when I'm in cycle. I find that stopping what I'm doing every 20-30 minutes or so and walking around really helps. If I spend a couple of hours looking at the screen concentrating on an algorithm or debugging a problem I can get hammered.

-Dennis-

edited because I can't spell

Title: Re: 'Ello!
Post by LeLimey on Nov 12^th, 2007, 2:08pm

Oh hells bloody bells, as the mother of a kid with CH this thread has made me cry. I hate seeing kids go through this. Jasper is a lot younger than you but I hope when he is bigger he has as good a friend as Raikana is to you Spartan. Raikana my hat is off to you, I just hope my daughter grows up with attributes like yours too (((HUG)))

Title: Re: 'Ello!
Post by Spartan1128 on Nov 12^th, 2007, 9:13pm

*sigh* It's so troubling that those still young have to go through such pain... I too hope your son will find someone as wonderful as Raikana... It makes all the difference in the world.