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Ghost Cluster
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Ghost Cluster
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Neuro Diagnosis
« on: Dec 24th, 2003, 7:49pm » |
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Holiday Greetings to all 
Visited the Headache Clinic at the Univ of Pittsburgh Med Center yesterday. Dr. Kaniecki. Bad news I have CH's. Good news they are not as severe as most of yours. He prescribed 240 mg of Verapamil a day.
In addition to the eye, head, temple pain, today my face became very hot and my jaw ached and I had trouble opening and closing my mouth. Of course my wife prefers it shut..lol Anyone experience those kinds of symptoms? My pain has been constant the last 6 weeks when it started. No breaks, but I'm able to sleep. Thanks for the support and suggestions etc.
How do you respond to this statement?
All headaches occupy some position along a linear continuum from mild to severe. Headaches differ from one another only in degree of severity, allowing for individual variation in reported symptoms generally consistent with severity. With this model we don't have to keep inventing new disease catagories to cover every new reported variation in symptoms.
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| « Last Edit: Dec 26th, 2003, 8:39pm by Ghost Cluster » |
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"Who could find Heaven a place of rest knowing that even one person remained in agony?"
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t_h_b
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Re: Neuro Diagnosis
« Reply #1 on: Dec 24th, 2003, 9:43pm » |
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Facial flushing, occasionally, but nothing with the jaw or mouth for me.
Maybe you have something other than/in addition to CH? Cluster pain isn't constant. If you have a headache that lasts for weeks, it's not a cluster headache. If you have pain in your jaw or trouble with your mouth that lasts weeks, it is probably not due to CH.
I could be wrong, I just haven't heard of symptoms like that associated with CH.
It could be that you're grinding your teeth from the pain and stress, maybe even when you're asleep. You can get a mouthguard from your dentist to prevent that.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Woobie
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Re: Neuro Diagnosis
« Reply #2 on: Dec 24th, 2003, 10:42pm » |
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TMJ???
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Patrick_A
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Re: Neuro Diagnosis
« Reply #3 on: Dec 25th, 2003, 12:23am » |
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If you arent awakened in the middle of a sound sleep with that awful pain. I'd venture to say you DON'T have CH's.
I know thats not what you wanted to hear, but i am sorry. CH's CAN last a few hours, but i'd bet typically they last about 1-2 hours for most. A constant pain that lasts for more than 4 hours raises a red flag for me.
So actually i should say....I am happy to say, it doesnt sound like CH to me.
Merry Christmas, Patrick 
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ave
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Re: Neuro Diagnosis
« Reply #4 on: Dec 25th, 2003, 9:05am » |
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Sorry to disagree....
If the clusters are (still) comparatively light, or if the attacks come ONLY in the daytime, they will not wake anybody from sleep. If you don't get nighttime attacks you just can't say.
It is better to say: if they do, it is clusters for sure.
And why anybody should wantto hear they have clusters is beyond me. But then, a lot that's going on here is...
Merry Christmas
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Patrick_A
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Re: Neuro Diagnosis
« Reply #5 on: Dec 25th, 2003, 9:16am » |
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You might be right Ave, But for sure i have never talked to anybody who could sleep with a CH, and i have never talked to anybody who had one constantly for 6 weeks. But i also know CH has very many different traits. I personally hope that Ghost Cluster doesnt have CH.
Merry Christmas, Patrick
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Do you think that when they asked George Washington for his ID, that he just whipped out a One Dollar Bill?
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jonny
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See the fat yellow/orange nerve, that is the nerve that causes cluster pain. See how it runs into the eye, it also runs into the jaw.
What does this mean?...Go ask your Doc.....LOL 
...........................jonny
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Patrick_A
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Re: Neuro Diagnosis
« Reply #7 on: Dec 25th, 2003, 10:13am » |
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Yup, And do you see that vein that is beside that yellow/orange nerve. I am inclined to beleive that it swells and puts pressure on that nerve that causes CH pain. Hence, reduce the swelling of that vein and no more pressure on that nerve!
Nice picture Jonny, never saw that one before!
Patrick
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Ghost Cluster
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Re: Neuro Diagnosis
« Reply #8 on: Dec 25th, 2003, 11:15am » |
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Thanks for the replies....The Headache specialist said I have a type of CH...because of the severe pain behind my eye, tearing of the eye and some of the traits you all have. He said it's a mild CH because I can sleep at night. He ruled out Migranes because I'm not sensitive to light and don't have any other traits associated with them. I'm having an MRI of the brain next week and a blood test to rule out temporal arteritis. He thinks it could be a sinus related CH. Anyone ever here of that?
Yesterday I had severe pain behind my right eye that lasted all day and my head felt like it would burst. I know that's not typical of CH's. The Doc thinks because of my age 57 the CH's are not as severe. Any opinions?
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Patrick_A
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Re: Neuro Diagnosis
« Reply #9 on: Dec 25th, 2003, 11:21am » |
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I just dont want to speculate GC. I truly hope ya dont have CH. But you are welcome here nevertheless. CH definitly has different traits. But some of the common traits tend to not veer too far from the normal CH.
Merry Christmas to you, patrick
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don
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Quote: I'd venture to say you DON'T have CH's.
I know thats not what you wanted to hear, but i am sorry |
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Tell me that and I promise you will have nothing to be sorry about!
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Ghost Cluster
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Re: Neuro Diagnosis
« Reply #11 on: Dec 26th, 2003, 2:38pm » |
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on Dec 26th, 2003, 8:20am, don wrote:
Tell me that and I promise you will have nothing to be sorry about! |
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Don...you are right...I truly would have nothing to feel sorry about if they aren't CH's. I pray that they aren't. I hope I haven't given the impression that I want CH's just so I can be part of the group..yikes... I wouldn't wish that suffering on anyone. The specialist said it's a form of CH's. I'm having some more tests MRI and blood. Mabye he will change his diagnosis then. I am not in anyway trying to compare my pain/suffering with anyone here. Whatever I have is truly painful...with many of the same symptoms of CH's. My heart goes out to all here who suffer. Whatever I have I will still stay connected to this site because it already has brought me some comfort and valuable information...regarding meds etc. Happy PF New Year to all!
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Charlie
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Re: Neuro Diagnosis
« Reply #12 on: Dec 26th, 2003, 2:54pm » |
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Maybe we should give the MDs a chance. It'll be great if it isn't CH but it sounds too much like it to me. I truly hope they'll never wake him up.
I'm hoping he'll stick around and let us know how it works out. At least he's on the right track. My jaw was never affected but I like Jonny's point.
Charlie
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kim
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Re: Neuro Diagnosis
« Reply #13 on: Dec 26th, 2003, 2:57pm » |
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There is no such thing as a "mild ch".........
PFDAN and well wishes
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River_Rat
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Re: Neuro Diagnosis
« Reply #14 on: Dec 26th, 2003, 3:18pm » |
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I've had shadows that have lasted for days, with big time hits every few hours, thats when I'm peaking.
I have also had pain in my jaw, but not major.
I've also slept through the night while in cycle, but only while on meds. For some reason while taking Amerge AM and PM I was pretty much pain free at night. I would only get hit during the day.
Just my 2 cents
LEE
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Renee
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Re: Neuro Diagnosis
« Reply #15 on: Dec 26th, 2003, 6:00pm » |
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GC,
Read up on CPH (chronic paroximal hemicrania), which is a headache in the cluster family where the pain is always there unless medicated just not at the massive intensity of a cluster.
I suffer from CPH and CH. CPH can be kept in control with Indocine and o2 and I have found that verapamil and topomax is a good CH preventative along with the o2.
CPH does cause me some jaw pain and pain behind the ear at times. Oh...if doc gives you Indocine..TAKE ON A FULL STOMACH ALWAYS!
Do you have any popping in your jaw when you eat or open jaw real far? The clenching/grinding of teeth is a contributor to my headaches and I can't find a way to stop doing these things, but I just continue to clench and grind thru the hard plastic tmj guards.
good luck and i.m. me if you have any questions about cph.
renee
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Ghost Cluster
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Re: Neuro Diagnosis
« Reply #16 on: Dec 26th, 2003, 8:40pm » |
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How do you respond to this statement?
All headaches occupy some position along a linear continuum from mild to severe. Headaches differ from one another only in degree of severity, allowing for individual variation in reported symptoms generally consistent with severity. With this model we don't have to keep inventing new disease catagories to cover every new reported variation in symptoms.
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Lizzie2
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Re: Neuro Diagnosis
« Reply #17 on: Dec 27th, 2003, 1:59am » |
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A brief article on CH (not going to endorse or condone) from Diamond Headache Clinic...discusses pain.
http://www.diamondheadache.com/article_archives/cluster_headache.html
Renee,
I have to read up on these headache types again, but correct me if I'm wrong. Isn't it Hemicrania Continua where the headache is present all the time at the moderate level with the stabbing headaches on top?
I thought with CPH you had breaks in between but the attack frequency had to be greater than 16 attacks per day, and the attacks are severe in nature, located around the orbital of the eye or at the temple.
In both cases, the headaches are one sided and relief is almost 100% guaranteed with indomethacin (indocin). Also, congestion and tearing are present on the afflicted side with both types of headaches. Droopy eye can be present with both types as well.
This is off the top of my head for now...I'd have to pull out my headache textbook and reread for more accuracy, but I thought this was what I remembered...
Let me know if I'm wrong...I'll have to double check the text in the morning! Take care!
~Lizzie
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Prense
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Re: Neuro Diagnosis
« Reply #18 on: Dec 27th, 2003, 8:53am » |
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on Dec 26th, 2003, 8:40pm, Ghost Cluster wrote: How do you respond to this statement?
All headaches occupy some position along a linear continuum from mild to severe. Headaches differ from one another only in degree of severity, allowing for individual variation in reported symptoms generally consistent with severity. With this model we don't have to keep inventing new disease catagories to cover every new reported variation in symptoms.
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That would be just fine if the same med worked for every type of HA. Since that is not true, there must be different categories for HAs. When a cure for CH is found, people that are misdiagnosed will truly be hating life... Symptoms allow for diagnosis...which leads to treatment. Therefore, I think the above statement is a load of crap.
Chris
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don
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Quote:| I wouldn't wish that suffering on anyone. |
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Having CH or being part of this group?
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Ghost Cluster
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Re: Neuro Diagnosis
« Reply #20 on: Dec 27th, 2003, 4:31pm » |
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on Dec 27th, 2003, 9:32am, don wrote:
Having CH or being part of this group? |
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Don,
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"Who could find Heaven a place of rest knowing that even one person remained in agony?"
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Unsolved
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Re: Neuro Diagnosis
« Reply #21 on: Dec 29th, 2003, 12:13am » |
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About the jaw pain...I noticed that others are not having this pain. I DO have this pain, mainly when it's a KIP 9 or KIP 10 ... then > You can just draw a line down the middle of my face and one whole side is POUNDING IN PAIN ... including my jaw, teeth, and ear. I think I know what it feels like to have your face crushed with a bat !
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