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Topic: going to the neurologist today (Read 909 times) |
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Charlotte
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going to the neurologist today
« on: Aug 4th, 2006, 10:55am » |
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Appointment in 3 hours.
My attitude sucks. Please keep me in mind and prayer today.
Thanks.
Charlotte
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drivin_blind
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Re: going to the neurologist today
« Reply #1 on: Aug 4th, 2006, 11:06am » |
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Try to be upbeat. Best of Luck. Let us know if they have discovered "The Magic Pill" yet.
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LeLimey
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Re: going to the neurologist today
« Reply #2 on: Aug 4th, 2006, 11:11am » |
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Charlotte you probably know more than he does by now.. tell him what you want hon! 
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Bond007
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Re: going to the neurologist today
« Reply #3 on: Aug 4th, 2006, 11:11am » |
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Yeah, Charlotte! Definitely try to stay positive.
I'll be sending you good vibes today. 
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Sometimes life bites you in the ass -- that's what drugs are for!!
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Mattrf
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Re: going to the neurologist today
« Reply #4 on: Aug 4th, 2006, 11:27am » |
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Good luck, I really hope he can come up with something to help you and is a good doc for you.
Prayers and vibes coming your way.
Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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E-Double
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Re: going to the neurologist today
« Reply #5 on: Aug 4th, 2006, 3:44pm » |
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There will be no sucking....ummmmmmmmm
Stay positive 
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Charlotte
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Re: going to the neurologist today
« Reply #6 on: Aug 4th, 2006, 5:41pm » |
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I conveniently had a headache for the neurologist. He said it has elements of but is not cluster headache or chronic paroxysmal hemicranium, and it also is not migraine.
He has prescribed Neurontin and gave me a chart. He said I can keep using the kudzu & the maxalt melt. I have a med to try and answers to the questions that the gp didn't answer. So, officially, I'm not a clusterhead because of the frequency and because Verapamil didn't work when I tried it in 1998, and Verapamil works for cluster headaches.
Do we have a support group for no name elements of headaches?
Also, I am a supporter, even if I'm not really one of us.
Charlotte
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| « Last Edit: Aug 4th, 2006, 5:49pm by Charlotte » |
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prcole18
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Re: going to the neurologist today
« Reply #7 on: Aug 4th, 2006, 5:54pm » |
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From what I know Verapamil does not work for everyone with CH.
Also a lot of the time you need to be on at least 480mg of Verap to see some success from what ive heard.
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| « Last Edit: Aug 4th, 2006, 5:56pm by prcole18 » |
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Bond007
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Re: going to the neurologist today
« Reply #8 on: Aug 4th, 2006, 6:02pm » |
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I've also just read that it's not uncommon for clusterheads to be prescribed doses of up to 800mg of verapamil for it even to be effective. Maybe you need a second opinion?
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Sometimes life bites you in the ass -- that's what drugs are for!!
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prcole18
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Re: going to the neurologist today
« Reply #9 on: Aug 4th, 2006, 6:23pm » |
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I agree with Bond007, id get a 2nd opinion
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Brumm
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Re: going to the neurologist today
« Reply #10 on: Aug 4th, 2006, 6:37pm » |
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on Aug 4th, 2006, 5:41pm, Charlotte wrote:Also, I am a supporter, even if I'm not really one of us.
Charlotte |
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You can still be one of us. Get a second upinion.
I was talking to thre doctors before I got one even heard about CH.
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| « Last Edit: Aug 4th, 2006, 6:38pm by Brumm » |
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LeLimey
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Re: going to the neurologist today
« Reply #11 on: Aug 4th, 2006, 7:25pm » |
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I'd get a second opinion too.. based on the fact that he isn't doing much for you regardless.
His knowledge of CH is sketchy, verapamil IS the first line of defence against CH but for me it didn't work although admittedly I couldn't get higher than 480mg without passing out due to low BP!
Good luck Charlotte and whatever it is, you have our support, we WILL get you through this CH or not okay?!
Helen
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E-Double
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Re: going to the neurologist today
« Reply #12 on: Aug 4th, 2006, 7:25pm » |
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Hey Charlotte,
PF wishes regardless!!!
If you do not mind refreshing my memory, how do your ha present?
frequency?
location?
duration?
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Charlotte
CH.com Alumnus
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Re: going to the neurologist today
« Reply #13 on: Aug 4th, 2006, 9:47pm » |
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Thank you for the moral support. I appreciate it.
"If you do not mind refreshing my memory, how do your ha present?"
-starts with one or two rounds of forehead sweating, r. side nasal drip, pf time, then two ramp ups of pain through inside corner of r. eyebrow, pain in f. temple &/or r. eyebrow, * somewhere in there is rocking & pacing but I can't seem to remember right now.
"frequency?"
-Hit every 2 hours since 2-8-06, with slight variations of less 40 minutes or so either way.
-Before that hit every 3 hours between 11-27-05 and 2-9-06.
-Before that, every 4 hours for several months.
-A year ago, only hit every 8 to 12 hours.
"location?"
-right side, starts above right jaw hinge, travels up and over down through the eyebrow. End of trigiminal nerve burn. Main pain from inside corner of r. eyebrown & straight down in cheek.
"duration?"
-The pain portion currently lasts 12 to 40 minutes. During the farther spaced hits it may last up to 3 hours if untreated.
-some of the high & low mini-cycles end with back to back headaches with 7 to 12 pf minutes in between.
I don't know if I mentioned it anywhere beside the kudzu thread.
I am going to try the neurontin. I have nothing to lose. The neurologist did actually listen and did seem to know what he was talking about. He did not look at me while he was writing, which keeps him out of the "good" category, but he did listen and he asked some good questions and answered some of the questions I've been asking for years.
It's funny that the very thing that drew me here, getting hit every 2 hours, is what puts me over the 3 to 8 daily category.
Charlotte
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starlight
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Re: going to the neurologist today
« Reply #14 on: Aug 4th, 2006, 11:01pm » |
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Charlotte,
I am disappointed that your neurologist did not have any official diagnosis to give you. The headaches that you are having do have a name, and he needs to figure out what they are. Either that or he needs to refer you to someone who can. My advice is to go to a headache clinic. I have been to several neuros--I (I can only speak personally) found a higher level of "integrity" at the headache clinic in terms of them taking a very very careful history of my headaches. Also there you find the "headache docs"--they know their headaches.
Also, I will have to look on the net--there is some headache that mimics clusters and often (or perhaps exclusively) strikes women but is not clusters. However it is similarly painful. Although I am not convinced you don't have clusters. Not everyone presents "typically" in every single way.
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starlight
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Re: going to the neurologist today
« Reply #15 on: Aug 4th, 2006, 11:15pm » |
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OK--I just did a search on the net--here are two ideas--"paroxysmal hemicrania" or there is also a diagnosis called "probable cluster headache" (which I did not know)--well I guess there are a lot of different headache types out there--but those are two possibilities???
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starlight
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Re: going to the neurologist today
« Reply #16 on: Aug 4th, 2006, 11:25pm » |
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Charlotte--see this on paroxysmal hemicrania--sorry I do not know how to "copy" links: http://headaches.about.com/od/essentialinfosheets/a/parox_hemicran.htm
It says in the article they can be "chronic or episodic" and that there can be "5 to 40" headaches a day.
Maybe you have two different types of headaches occurring at one time, but does this sound like it could be one of them?
Hope it helps figure it out.
Starlight
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starlight
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Re: going to the neurologist today
« Reply #17 on: Aug 4th, 2006, 11:26pm » |
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oh this thing copies links for us--sorry didn't know
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Charlotte
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Re: going to the neurologist today
« Reply #18 on: Aug 4th, 2006, 11:39pm » |
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chronic paroxysmal hemicrania was the other thing he said my headache had elements of but was not.
I do know Verapamil doesn't work for everyone.
The kudzu, 1/4 maxalt melt, & red bull keep me fairly functional, and I'm continuing them, just adding Neurontin which starts at 1 a day for a week, and adds another daily for a week, up til 9 a day. I should know long before I hit that # if it's going to give me a break.
I really appreciate the moral support. If I go eventually go back to every 3 hours, I will fit the definition again, but I'm hoping for a better break than that. I love my job & it is a real struggle to get through the work day.
Anyway, thank you again.
I can still offer other people moral support but I guess I will have to be quiet about advice.
Charlotte
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starlight
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Re: going to the neurologist today
« Reply #19 on: Aug 4th, 2006, 11:39pm » |
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Was your neuro aware that the paroxysmal hemicrania can be episodic like cluster headache in that regard? Well, I will stop the detective work for now.
Hope you figure out what it is. STar
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Charlotte
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Re: going to the neurologist today
« Reply #20 on: Aug 4th, 2006, 11:41pm » |
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No, he was not aware. Thank you for the research. If you want to send me any links, I'll read everything. (I see the links up above.)
Charlotte
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| « Last Edit: Aug 4th, 2006, 11:59pm by Charlotte » |
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nani
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Re: going to the neurologist today
« Reply #21 on: Aug 4th, 2006, 11:49pm » |
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Char, I don't care what you have... you are always welcome here.
PH and CPH are often diagnosed/ruled out during a trial of indomethacin. Worth a try, I think. The neurontin won't interfere with kudzu and the other meds. Expect some dizziness and fatigue as you ramp up. Keep us posted, OK?
hugs and pf wishes, nani
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starlight
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Re: going to the neurologist today
« Reply #22 on: Aug 5th, 2006, 12:00am » |
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Charlotte,
Here's one good link: http://health.enotes.com/neurological-disorders-encyclopedia/paroxysmal- hemicrania
(ps. you are always welcome here...and I know what it is like to have to keep banging on the door for answers)
(ps. thought for some reason you said in your other post before it was of episodic nature--my brain is fried--either way trying the indomethacin might be well worth it--your symptoms sound remarkably similar in many ways to this disorder)
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Charlotte
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Re: going to the neurologist today
« Reply #23 on: Aug 5th, 2006, 12:01am » |
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Thank you Nani. I'm blondish so dizzy is good. Took the first one. Do you think it will help me sleep, or will that come later?
Charlotte
PS Thank you Star. Am reading now.
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| « Last Edit: Aug 5th, 2006, 12:04am by Charlotte » |
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nani
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Re: going to the neurologist today
« Reply #24 on: Aug 5th, 2006, 12:06am » |
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Neurontin helped me get sleepy, but didn't always help me sleep all night. You may feel a bit of a "buzz", too. Nothing major, not really unpleasant...just kind of "hazy". Sleepy, pf wishes to you, sweetie, nani
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