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Old 11-26-2013, 07:35 PM   #1
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Default Cluster Headaches

Anyone know much about them or have had this disease? I just got diagnosed with it by a Neurologist. Was wondering if you have it, how are you coping with it. They're known as the "suicide headaches" and I certainly know why. I've done the research on it, was just wondering if anyone has it or know someone that does. It's not migraines. Totally different. Any input would be appreciated.
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Old 11-26-2013, 07:39 PM   #2
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Default Re: Cluster Headaches

Did anyone use the words "trigeminal neuralgia" with you?
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Old 11-26-2013, 09:25 PM   #3
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Default Re: Cluster Headaches

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Originally Posted by The Yancey View Post
Did anyone use the words "trigeminal neuralgia" with you?
The Neurologist did say that. He thinks it's Cluster Headaches because my symptomoligy matches it exactly. But he said it could be TN too. He is flying in a specialist from NY to make an exact determination. All I know is it makes my kidney stones feel like a walk through the park. He hasn't ruled out TN, but thinks its Clusters. I do know that I have removed all my guns from my house. It's gotten that ba at times.
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Old 11-26-2013, 09:28 PM   #4
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Default Re: Cluster Headaches

Is the pan around just one eye basically and starts at the same time each day?
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Old 11-26-2013, 09:33 PM   #5
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Default Re: Cluster Headaches

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Originally Posted by The Yancey View Post
Is the pan around just one eye basically and starts at the same time each day?
Yes. Behind left eye, shoots to back of head. Feels like a hot poker through my face. Just left side only. And it's the worst pain I can possibly imagine. Like an ice cream headache that lasts usually an hour and a half to three hours, but have gone for 7 hours at a time too. It's absolutely unbearable. And I usually only have about 2-3 mins warning. Always between 5-7 pm and 2-4 am. I haven't slept more than 5 hours a night in 2 months now. Pain killers do nothing. I eat hydrocordone like tic tacs. Nothing helps the pain at all.
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Old 11-26-2013, 09:36 PM   #6
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Default Re: Cluster Headaches

That sounds like a cluster. Laying down helps migraines but can make clusters worse. Has your doctor told you to try breathing pure oxygen at a minimum rate of 12 litres per hour? That provides dramatic relief to many people with clusters.
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Old 11-26-2013, 09:42 PM   #7
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Default Re: Cluster Headaches

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Originally Posted by The Yancey View Post
That sounds like a cluster. Laying down helps migraines but can make clusters worse. Has your doctor told you to try breathing pure oxygen at a minimum rate of 12 litres per hour? That provides dramatic relief to many people with clusters.
Yes sir he has. I should be getting it soon. Laying down is murder when the pain hits. Usually I'm on all fours when it hits. I think I can get the oxygen tomorrow. He has me on prednisone which gives me the damn hiccups and heartburn all day. Valium to help me sleep thru the night. (Does NOT) work. It knocks me out, but once the pain hits I am wide open awake. Painkillers are a joke. I had a 5 hour episode the other night, ate 6 or 7 hydrocodone and all it did was make me throw up an hour later. Did nothing for the pain.
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Old 11-26-2013, 09:44 PM   #8
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Default Re: Cluster Headaches

I have to go. I feel it coming. Oh Jesus. Thanks Yancey.
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Old 11-26-2013, 09:48 PM   #9
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Default Re: Cluster Headaches

I have seen no research on using drugs for neuropathy for clusters. I have a friend who had TN and Lyrica gave her dramatic relief. There are some injectable meds that are used for clusters. I am aware of some ongoing research using electrode implants to disrupt the cycle. Get that O2 right away. That is your first line therapy. I'll keep my eyes out for some new research.
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Old 11-26-2013, 10:10 PM   #10
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Default Re: Cluster Headaches

Here is a clinical trial using vagus nerve stimulation. It is at UNC: http://www.clinicalconnection.com/ex...&slID=10768732.

Here are some others: http://clinicaltrials.gov/ct2/result...&Search=Search
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Old 11-26-2013, 10:26 PM   #11
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Default Re: Cluster Headaches

Damn that sounds rough. All the best.
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Old 11-26-2013, 10:44 PM   #12
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Default Re: Cluster Headaches

I hope for the best for you man.
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Old 11-26-2013, 11:25 PM   #13
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Default Re: Cluster Headaches

Damn Drew... hope you can find some relief
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Old 11-26-2013, 11:31 PM   #14
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Default Re: Cluster Headaches

Holy crap, sorry man, that sounds incredibly rough.

Here's hoping you find a suitable treatment.
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Old 11-26-2013, 11:31 PM   #15
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Default Re: Cluster Headaches

I suffer from them. They have been dormant for 2 yrs. I take Imitrex for mine. If I catch it before it starts then the meds work. The worst is waking up when you're in a full blown episode.

Mine are focused around my right eye and temple. It also causes congestion in my nose during the headaches. Walking around helps a little if I'm having one. I've also laid in the shower with the water running for hours. That helps some as well.

My Dr prescribed steroids to break the cycle of day after day headaches if it goes for longer than a week.

How old are you? Mine started at 26 and have been less and less frequent. I'm now 34.
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Old 11-26-2013, 11:44 PM   #16
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Default Re: Cluster Headaches

Quote:
Originally Posted by ACPhilson View Post
Anyone know much about them or have had this disease? I just got diagnosed with it by a Neurologist. Was wondering if you have it, how are you coping with it. They're known as the "suicide headaches" and I certainly know why. I've done the research on it, was just wondering if anyone has it or know someone that does. It's not migraines. Totally different. Any input would be appreciated.

http://my.clevelandclinic.org/disord...che_types.aspx

I used to take Indomethacin. I have autonomic failure and certain type of headaches were part of it. Anyway.... use to bite a pillow and push my feet on the walk due to the severe pain so I understand the pain. I hope they did an MRI and look at diabetic screenings , and BP /HR fluctuations. Hydrocodene didn't do jack for me. I can't lay flat.
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Old 11-27-2013, 12:16 AM   #17
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Default Re: Cluster Headaches

I have treated many patients with headaches and I know that 90% have a cervical (neck) tension component contributing. This is not so for migraines and few other variety of HA. Your symptom areas you describe like behind the eye and back of the head are common areas of referred pain. If you have behavior that increases the incidents of HA pain like slouching over a computer or looking down at your phone a great deal can inflame muscles and tendons in the cervical spine.

I personally have had strong and powerful HA pain that was successfully treated with anti inflammatory meds and other instances that exercise/heat/massage were helpful.

Try and document the pain as to time it lasts, what you were doing when it occurs, what relieves or intensifies it, etc. talk with your MD regarding all treatment options, not only meds. Good luck in finding relief!
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Old 11-27-2013, 01:19 AM   #18
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Default Re: Cluster Headaches

Wow... Those sound awful!
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Old 11-27-2013, 06:23 AM   #19
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Default Re: Cluster Headaches

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Originally Posted by gamecockphan View Post
I suffer from them. They have been dormant for 2 yrs. I take Imitrex for mine. If I catch it before it starts then the meds work. The worst is waking up when you're in a full blown episode.

Mine are focused around my right eye and temple. It also causes congestion in my nose during the headaches. Walking around helps a little if I'm having one. I've also laid in the shower with the water running for hours. That helps some as well.

My Dr prescribed steroids to break the cycle of day after day headaches if it goes for longer than a week.

How old are you? Mine started at 26 and have been less and less frequent. I'm now 34.
Same thing except mine is on left side. Nose etc. Went to bed earlier tonight and like you said, 2-3 hours after your asleep you get in a huge episode. This is insanity. I'm 44. I'm take prednisone. Haven't tried the shower trick yet. Will do that. I know I am damn near terrified of going to bed now. Cause I just know its coming. Shit just started like two months ago. Never had this before.
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Old 11-27-2013, 07:29 AM   #20
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Default Re: Cluster Headaches

You are a fighter man, you will not allow this to get the better of you.
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