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Topic: Introduction (Read 619 times) |
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Brassbear
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This is my first visit here. I've suffered migraines since my return from Viet Nam in the 70s. This is my first cluster headache. It started on the 6th of December and now seems to be winding down. My wife took me to the hospital this past Monday. The dotor there diagnosed me. He gave me 25mg phenegran tablets and I've been able to tolerate the pain. The list of symptoms that went with this headache is long. The wierdest being a tingling sensation down the center of my tongue and the taste of metal in my mouth. I thought I was going to have a stroke. This pain is much more intense and last much longer than any migraine that I had ever suffered. What can I expect? Is this a life stage development thing? Can anyone give me some insight? Thanks.
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Bob P
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Shut up Bob!
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Re: Introduction
« Reply #1 on: Dec 19th, 2002, 12:55pm » |
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Your doc may be wrong in his diagnosis. Cluster headaches usually last 1/2 to 2 hours, with a very abrupt beginning and end to each attack. Usually 2-4 attacks a day for 4-16 weeks.
If your headache is lasting many hours or even days, chances are it's not cluster.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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echo
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Re: Introduction
« Reply #2 on: Dec 19th, 2002, 1:45pm » |
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I would get a second opinion from a neuro. The length sounds too long to be CH. Unless they were actually a series of 30 - 45 minute CH's with very short intermissions between each one.
BTW - Never experience the tounge or taste situation.
CH is a mutant beast - something different for everyone.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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firebrix
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I must never weaken.
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Re: Introduction
« Reply #3 on: Dec 19th, 2002, 2:13pm » |
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Welcome Brassbear!
Sorry you had to find us. I hope you feel better today.
Mopar has none of the tingling taste sensations you have and I agree with Bob and echo that you might be misdiagnosed. Maybe try another neuro who is informed about CH? I am sure someone will set you up with a good one who understands - I can't help as I live down under.
Check out the search on this site - buttons on the left of your screen. Type in any questions you might have and prepare to be amazed at the response. More there than anywhere. Also check out the OUCH site - (and join!) there is some really good scientific stuff there too.
Wishing you happier days. I have the greatest respect for Nam vets. Here, people volunteered, but you guys gave up your lives when you were SENT into hell. My own friends were never quite the same afterwards. No wonder. I guess its something you cannot really understand unless you've been there.
All the best friend. Feel free to IM or E mail me if I can help, but there are others here who are more informed than I and will surely help. Just ask.
PFDAN
firebrix
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"All that it takes for the triumph of evil is for good men to do nothing."
Edmund Burke
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Brassbear
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I hope you folks are right. The diagnosis was actually made by several doctors at the VA hospital in Indianapolis. The worst part of the headache does not last for days but for periods anywhere from 1 to 4 hours. What I have been calling a part of the headaches is the 'shadow' which does not go away. The information that the VA had on CH is pretty much what I've been experiencing. As you folks have said, I seem to have some specific symptoms that are peculiar to me. I know this; it hurts like hell.
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Donna
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Re: Introduction
« Reply #5 on: Dec 19th, 2002, 3:13pm » |
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I, too, am glad you found us. You will find more advice and understanding here than anywhere else.
You really should take advantage of the info collected here from many hundreds of cluster sufferers. You will find everything you could want in the buttons at the left.
Why not start with the cluster quiz and work your way through to the list of docs names we've gathered.
Let us know what you think after you take the quiz. It is a very good test for cluster headaches.
Good luck to you.
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Azrael
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Sometimes... Being good just ain't worth it.
   
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Re: Introduction
« Reply #6 on: Dec 19th, 2002, 3:40pm » |
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Welcome to the board! Sorry that the beast has packed your cranium with an infinite string of super strength black-cats, and finds great joy in watching them go off. Good luck!
PFDAN................................... Drk^Angel
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rwolkie
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Re: Introduction
« Reply #7 on: Dec 19th, 2002, 3:51pm » |
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nice to meet you brassbear, im new here also, i have watched the boards for several months, and i can say that these people really do understand and are very helpfull. For me, i can say ive ever experienced the "metal" taste. I would say though based on my experience that it still could be CH, mine last about 3 hours, with shadows of varying degrees in between those times for the cycle. I would still get a second opinion. During my second cycle i did not tell the new doctor what the first had diagnosed, and she came up with the same conclusion, so i feel pretty confident . Maybe you should consider doing something like that to prevent a doc from just going with the flow and taking the easy way out, MAKE them diagnose. I do have one question , do they come at the same time every day? Mine are at EXACTLY the same time every day during the cycle. Give or take 10 minutes. I do know that intense workouts seem to help with them, which sucks , who the hell wants to do that? lol. They work for me, but the second i stop, they pick up their intensity. Another thing i do, which only works for a few seconds ( which at your peak is worth it) is i take my finger and jamb it in the back of my neck, just below the skull on the side that is hurting, why this works i dont know, there is no pain in my neck. But for a few seconds, dulls the pain . Who knows??? I hope you find some answers soon, i know it sucks.
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Bob P
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Shut up Bob!
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Re: Introduction
« Reply #8 on: Dec 19th, 2002, 3:53pm » |
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Indianapolis! Well that explaines it. Hub is from Indiana also. They told him he had clusters but we all know he's a meegrainer. His dog, Peety, is the clusterhead.
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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BobG
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Re: Introduction
« Reply #9 on: Dec 20th, 2002, 4:49am » |
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Put metallic taste in your Google and it should give you lots of hits about dysgeusias (altered taste)
Are you taking any antibiotics? Some can cause the metallic taste.
You said you were given phenegran? Did you mean Phenergan. That's a brand name for Promethazine. It's an antihistamine. Don’t think that is what a cluster sufferer needs.
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Stay stressed. Never relax. Never sleep. Ever.
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Brassbear
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Bob, yes, that is the medication that I meant to type in. I just spelled it wrong. It did have a strong sedative effect on me. No, I do not take any antibiotics currently. I take several other medications daily. The pharmacist, the doctor and I have already discounted reactions to those medications. Anyway, I've been on all of them for quite some time and not had this happen before. I'm still dealing with a shadow headache which does not go way. I seem to be getting hit twice a day, once about 11:30 AM and again at about 5:30 to 6 PM. The bad pain is lasting about 4 hours or so. I had not been trying to keep track until yesterday and reading on this site. Thanks for your info. Michael.
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BobG
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Re: Introduction
« Reply #11 on: Dec 20th, 2002, 8:24am » |
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11:30am? Is that about the time you take a lunch break at work?
5:30 - 6:00pm? Is that about the time you relax for dinner?
If yes, don't do that any more.
See my tag line.
Or move to another time zone and confuse the hell out of the beast. 
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Stay stressed. Never relax. Never sleep. Ever.
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Brassbear
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BobG: Actually, those are times of INCREASED stress. I'm an RN at a children's home and this is the time that I deal with the children the most. And since stress seems to be my middle name it should be no problem to obey your tag line! 
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Virginia
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Re: Introduction
« Reply #13 on: Dec 20th, 2002, 12:36pm » |
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Hi Brassbear,
Welcome, and I hope you don't have Clusters! 
I've never had the metal taste that you mentioned.
Make sure to take the cluster quiz. Do you have the teary, red eye on the same side as headache? Stuffy nose? It is a one-sided headache? These are all tell-tale signs.
Good luck to you and I hope that we can lead you in the right direction.
Virginia
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The Clusterhead formerly known as 9erfan.
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SommelierCH
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Re: Introduction
« Reply #14 on: Dec 22nd, 2002, 7:23am » |
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Brassbear,
Sorry you had to find us, but glad you are here.
What works for me is a triptan, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, under the tongue dissolving tablets, NOT the regular kind which take too long to work) combined with oxygen therapy. You can’t get many Maxalt tabs from insurance (6 per month max. for me) so you have to save those for the Big One and you can’t take more than 2 in any 24 hour period, so the oxygen is absolutely necessary for all the other times you feel the shadows creeping in. Go to the search button in the top right corner and type in “oxygen” and read up. This site is your one stop information resource, so start reading all the categories on the left hand side of the page, read it all, the more knowledge you have the better you can communicate with the medical community. Be sure to read about and do a search for “triggers”, these are catalysts that can really set us off. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. When I feel the shadows creeping in I hit the Oxygen and that pushes them back. However, when I’m asleep I can’t feel the shadows increasing and I wake up with the Big One. Jonny clued me in, that if you take abortive triptans (I use Maxalt MLT 10mg. or Zomig ZMT 5mg., both are quick dissolving tabs) before going to bed, they can prevent that night time attack, especially if you get hit, like I do, within 2 hours of going to sleep. The half-life of both of these tabs is in the 2-3 hour range. This has enabled me to get quality sleep these last 2 weeks. Avoiding triggers during your cycle can dramatically affect the intensity, duration and number of attacks.
Good luck,
David J.
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Brassbear
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David J: Thanks. Any info is appreciated. So far the only triggers that I've noticed are bright lights, red wine even in the smallest amount and the smell of some perfumes and after shave lotions. I think those are also alcohol based.
So far no foods. I have added stiffness to the neck as one of my symptoms when the headache is building up and present.
Michael
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