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Sheridan

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just been told by doctor what i have!
Jan 28^th, 2011 at 9:12am

Hey All,

After suffering from these headaches for years, but only once a year for a few weeks, it has recently started again. Ive had 5 'attacks' since January. They always come on at night, at around 12pm and last for 2-3 hours.

Ive had these since I was about 17, but every time I wanted to do something about them(i.e see the doctor) they stopped and I took no action. I put it down to migraines.

Last night was a messy one though. I wanted to rip my eye out - the pain was so unbearable.

I booked in for a eye test this morning, my eyes were tested and given the all clear. I then booked in to see my doctor.

Once i told him they are re-accruing every year or so he recognised the symptoms straight away as cluster headaches. I looked up the symptoms and sure enough they were exactly what I suffer from. Worst pain imaginable, runny nose, watery eye, always at same time of night, above my right eye socket.

I feel for people that get them daily, I know mine are here at the moment but hopefully they will pass soon and they will be gone for another 18 months or so.

My doctor has prescribed me some medicine to take when i feel the attack coming on- if anyone has any extra info I would appreciate it.

Also i am interested to know if things can set it off? I play sports and the last two attacks have happened after i was playing football - Im hoping its not connected.

Thanks

Ian

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Jackie

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Re: just been told by doctor what i have!
Reply #1 - Jan 28^th, 2011 at 9:38am

Hi Ian and welcome to the community. I'm sorry you have the need to be here but since you do it's the best place.

There will be much more knowledge folk than I around to help you.

Alcohol is a trigger for almost all episodic suffers.

Oxygen therapy is the #1 abortive for the majority. Check out the 'oxygen info' button on the left.

Tell us a little more about what your doctor has prescribed.

Read all you can both here and on the OUCH site (button on the left). Knowledge is power.

As mean as this condition is, it's manageable.

Hang in there

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: just been told by doctor what i have! Reply #2 - Jan 28^th, 2011 at 10:14am Hi Ian, Welcome! Exercise is a trigger for me. I always get hit within ten minutes of cooling down. Now that you have a name for your pain... stick around. Read all that you can so you have all the tools you need to fight your fight. Jeannie
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Guiseppi

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Re: just been told by doctor what i have!
Reply #3 - Jan 28^th, 2011 at 10:21am

Exercise is one of the wobblers, many use it as an abortive, they feel an attack coming on, they do vigorous exercise like squats, push ups or an all out run, and can abort their attacks.

For others, like you and jeannie, exercising can actually be a trigger. It takes a little work but it's worth it to diary a bit about your attacks to identify your triggers. Mine are alcohol, sustained stress, extreme hunger, and sleep cycle disruptions. Avoiding all triggers does not eliminate hits, just reduces the number.

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Read this link, 33 years of CH and nothing comes close to 02 for speed of abort, consistent success, and cost per abort. I feel the familiar tension in the neck and back of my head, the pain starts, 6-8 minutes of huffing pure 02, I'm pain free. On or off cycle there's an 8 pack of E-Tanks in my garage, my little security blankets!

Welcome to the board, don't lose this site. You will not find a more comprehensive collection of onfo on CH anywhere!

Joe

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

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LadyLuv CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1495 Champaign, IL Gender:	Re: just been told by doctor what i have! Reply #4 - Jan 28^th, 2011 at 10:24am Welcome Ian.. I'm really sorry that you've been diagnosed with CH's; But I am very happy that you found this site. You will find a ton of information and support.. Peace & Blessings LadyLuv
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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: just been told by doctor what i have! Reply #5 - Jan 28^th, 2011 at 2:33pm Surprised no one has mentioned melatonin for the night hits. It's been invaluable to my hubby to reduce or eliminate the night hits. Search this site for "melatonin" to get an accurate dosage. It's available OTC and a valuable weapon in the arsenal to fight the beast.
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his wife

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Re: just been told by doctor what i have!
Reply #6 - Jan 28^th, 2011 at 3:02pm

Hi Ian,

I'm sorry you are suffering so, but glad you are here. While I'm glad your doc today seems to be on the ball re: a diagnosis, a referral to a headache specialist wouldn't be a bad idea imo. Someone knowledgable in CH preferably (although those are sometimes tricky to find), who is up on the latest CH treatment and can run tests to rule out other potential causes just to be safe. They then can start a treatment plan which may be better than what your gp has prescribed based on the limited knowledge of gp's on CH. Also undoubtedly you will learn SO much information on here that should those routes not work, you can educate THEM on what you've learned about different treatment options. The knowledge you gain here will give you the power to fight this.

Also, if you have any supporters send them here too. Parents, spouses, friends, relatives...the more people you have around you, the better you'll be prepared for when those hits show up. The board has many supporters who can help them help you.

There's been discussion here whether head trauma or injury has lead to CH with no conclusive results that I'm aware of. Being in a family where if you're male you're on the football team, I can relate to being hit in the noggin', and can only imagine that would intensify the pain or trigger a hit should you be in cycle. I'm hubby's supporter and I can't even give him a haircut during cycle without it bringing on a hit. Just food for thought for what it's worth.

Welcome and wishing you some painfree time.

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Charlie CH.com Alumnus Offline Happy to be here Posts: 18971 Jamestown, NY Gender:	Re: just been told by doctor what i have! Reply #7 - Jan 28^th, 2011 at 4:26pm Hi Ian: Sorry we have to meet you because of this horror but I concur with everyone here. My neurologist asked me once what's new from here. You're in the right place. Let us know how you're doing. Charlie
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Linda_Howell

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Re: just been told by doctor what i have!
Reply #8 - Jan 28^th, 2011 at 4:38pm

These are random notes I took at the last convention that Dr. Peter Goadsby spoke at. Hopefully it will clear up some misconceptions that folks have.

Allergies, food sensitivites & hormones are NOT a factor in CH.

Only 7% have a family member with CH

There's a very slight correlation between head injuries and CH, but no relation to it.

Diagnosis is based entirely on symptoms.

Prevalance is 1 in 1000

Male to female ratio is 2.5 to 7.1

10% of episodics will become chronic no matter what they do or take. 30% in the reverse.

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Hurt people.....hurt people. Think about it.

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: just been told by doctor what i have! Reply #9 - Jan 28^th, 2011 at 5:55pm Linda, I think you got the ratio between men and women reversed. Everyone knows women don't get CH! (When I stir it I try to use a big stick!) Jerry
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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: just been told by doctor what i have! Reply #10 - Jan 28^th, 2011 at 6:54pm Jerry, How fast can you run? I just called Linda. She has given me permission to slap the shit out of you in Nashville. Dr. Goadsby said this btw and we all have a reverance for his expertise don't we now?
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his wife CH.com Old Timer Offline The sweetest sound is my children's laughter Posts: 271	Re: just been told by doctor what i have! Reply #11 - Jan 28^th, 2011 at 7:43pm Linda_Howell wrote on Jan 28^th, 2011 at 6:54pm: Jerry, How fast can you run? I just called Linda. She has given me permission to slap the shit out of you in Nashville. Linda you crack me up! Forget the opry, there's dinner and a show right there!
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KJ CH.com Alumnus Offline Posts: 596 Indianapolis, IN Gender:	Re: just been told by doctor what i have! Reply #12 - Jan 28^th, 2011 at 8:08pm I don't have any misconceptions about CH, and I can tell you, Linda, and Dr. Goadsby, that food allergies are a factor in CH for me. I don't think you should make blanket statements about other peoples headaches, especially to a newbie. Everyone is different.
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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: just been told by doctor what i have! Reply #13 - Jan 28^th, 2011 at 9:12pm I didn't make that blanket statement KJ...Dr Peter Goadsby did. I was simply reporting it for all who weren't there. He is going to speak at the next convention, I urge all who can attend to do so.
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: just been told by doctor what i have! Reply #14 - Jan 28^th, 2011 at 9:17pm I must be allergic to food. I swell up after every meal, and it doesn't all go away before I eat again.
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thebbz

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Re: just been told by doctor what i have!
Reply #15 - Feb 1^st, 2011 at 2:37pm

Quote:

I don't think you should make blanket statements about other peoples headaches, especially to a newbie. Everyone is different.

Geez KJ, what's up? I agree with you, however your statement is so unlike KJ. Lighten up maybe?? oh what do I know. Undecided

the bb
all the best to all the best
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BobG

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Re: just been told by doctor what i have!
Reply #16 - Feb 1^st, 2011 at 8:13pm

Sheridan- “I play sports and the last two attacks have happened after I was playing football - I’m hoping it’s not connected.”
Jeannie- “I always get hit within ten minutes of cooling down.”

After the exercise. 'After' is the key word. At least that is my theory.

Stay stressed. Never relax. Never sleep. Ever.

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Stay stressed. Never relax. Never sleep. Ever.

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Tuxguy

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Re: just been told by doctor what i have!
Reply #17 - Feb 1^st, 2011 at 9:19pm

Ian,
Sorry to hear about your suffering.
Mine started just over a year ago. I had a craniotomy on Dec. 27, of 2007. My Clusters started in Oct. of 2009. Mine At least are triggered by the seasonal changes and stress it seams. My first bouts lasted 5 months, a unusually long period of time I have since learned. But now last a few weeks. And always at night like clock work at 4am.
Most pain scales go from 1 - 10. I have a new pain scale that goes from 1 - 20. with a majority of them hitting the 15 to 17 range. Now with the use of Oxygen and Imitrex at the onset, they are now tolerable.
Ask questions here as these people know what they are talking about. As you have found the worst part was not knowing what was going on in your head.I find myself forgetting to use this site when I'm in the pain free periods but always come back. Good luck, and know that you are not alone.

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« Last Edit: Feb 1^st, 2011 at 9:20pm by Tuxguy »

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