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Topic: What the Neurologist said.... (Read 359 times) |
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Tiannia
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What the Neurologist said....
« on: Jun 14th, 2004, 6:23pm » |
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fuck... Well I guess it is a start.
He thinks that I am actually having two types of HA. But he is unsure as to which one is triggering the other or if they are triggering at all.
He is having me go into on Monday for an MRI and xray of my neck and the vertibrea. He wants to see if I have occipital neuralasia. (I am sure that I spelled that wrong) He thinks that this is either triggering the clusters or the other way around. I am supposed to go see him a week after the MRI to discuss the results.
He wants me to go to PT. He wants them to try and work out my neck and shoulders and see if I cant learn some relaxation techniques as I have tied up all the muscles and nerves in my neck and shoulders.
At least he did not say that he doubts I have CH or play the women bit. He just thinks we have another type to deal with as well.
Sorry not much to really tell you all. Wish I could have come back saying that I got everything I wanted... Not really sure how I feel about all of this. I mean the whole CH think is overwhelming enough, but to think that there is another type as well.... Think I need to let this sink in a bit.
PF Wishes my friends,
-Tia
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Prense
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Re: What the Neurologist said....
« Reply #1 on: Jun 14th, 2004, 6:44pm » |
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Well don't that just suck...
Hopefully it is nothing serious and can be treated.
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Superpain
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Re: What the Neurologist said....
« Reply #2 on: Jun 14th, 2004, 6:49pm » |
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WTF!? 
No O2!? No imitrex!? No anything!?
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Chris
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Tiannia
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Re: What the Neurologist said....
« Reply #3 on: Jun 14th, 2004, 7:10pm » |
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on Jun 14th, 2004, 6:49pm, Superpain wrote:WTF!?
No O2!? No imitrex!? No anything!? |
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I still have my Trex NS, but I got the typical lecture. "You should be taking your NS as soon as you feel a HA start." Well concidering I get minimum of 4 HA a day and only get 6 NS a month. I'll be damned if I am going to do that and be done with my entire months supply in less then 2 days. I hold on to them until I Know that it is going to be a K9+. It is like a safety blanket for me, that I know the Trex is there if it gets worse. I wish that they could understand that.
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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Superpain
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Re: What the Neurologist said....
« Reply #4 on: Jun 14th, 2004, 7:14pm » |
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Why did you not get O2?
I am going to fly back to Vegas and kick your butt if you don't get a script!
He's OK with it if it's medical O2, right? Or no?
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Chris
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purpleydog
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Re: What the Neurologist said....
« Reply #5 on: Jun 14th, 2004, 7:21pm » |
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Hey Tia,
Don't you hate it when you have to break in the dic,doc? Chalk one more up to Docs Without Ears, also known as DWE. Hang in there Tia. 
purpleydog
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Tiannia
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Re: What the Neurologist said....
« Reply #6 on: Jun 14th, 2004, 7:37pm » |
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on Jun 14th, 2004, 7:14pm, Superpain wrote:Why did you not get O2?
I am going to fly back to Vegas and kick your butt if you don't get a script!
He's OK with it if it's medical O2, right? Or no? |
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Yes if I get a scrpit then Shaun will "allow " me to get it. I know that this pisses everyone off here... but just let me deal with my marriage ok? You all are my support, so yelling at me about this just makes me feel lost.
I'm not sure why he would not write a script. Said we can talk about it after the MRI.
Vig says to enjoy the PT. You know get a couple of free massages and such... hell that might not be that bad. Even though it wount do dick for the CH.
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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Tiannia
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Re: What the Neurologist said....
« Reply #7 on: Jun 14th, 2004, 7:38pm » |
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Sorry guys. On top of this. I fucked up my back picking up sme tools that I bought my hubby for fathers day / anniversary, this weekend. So the additional pain, just is not helping.
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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jonny
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Re: What the Neurologist said....
« Reply #8 on: Jun 14th, 2004, 7:42pm » |
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on Jun 14th, 2004, 7:37pm, Tiannia wrote:| I know that this pisses everyone off here.. |
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It dont piss me off and I am everyone here, fuck the rest!!!!
..................................jonny
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Tiannia
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Re: What the Neurologist said....
« Reply #9 on: Jun 14th, 2004, 7:54pm » |
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on Jun 14th, 2004, 7:42pm, jonny wrote:
It dont piss me off and I am everyone here, fuck the rest!!!!
..................................jonny
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Thank you Jonny. I needed to smile. 
I cant wait to go get my kids and feel 2 yr old arms around my neck.
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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Lizzie2
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Re: What the Neurologist said....
« Reply #10 on: Jun 14th, 2004, 8:14pm » |
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Hey Tia,
Not sure if this link will help you at all, but you could always join headaches.about.com and ask some more questions of the people posting on it:
http://forums.about.com/ab-headaches/messages?msg=7078.1
If you have multiple headache types...you can still be ok, even when it is at its most overwhelming. Some days, those multiple headache types kill me, and one type triggers another often, but look at the support you have here. Hang in there!!!
I'll be prayin for ya!
Lizzie
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Luke63
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Re: What the Neurologist said....
« Reply #11 on: Jun 14th, 2004, 8:49pm » |
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Ti.....keep that head screwed on OK? You need anything...say it. I'm here too...we'll help ya....promise. Wait til you go for your follow up visit....hey...take the article my paper did on CH...take everything you can get your hands on! We're here for ya.  Luke
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I think we should all get together and do a movie..."Night of The Clusterheads". George Romero would have nothing on us!!!
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Superpain
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Re: What the Neurologist said....
« Reply #12 on: Jun 14th, 2004, 10:38pm » |
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Sorry Tia, I'm not yelling, just frustrated for you....
Hell, for that matter, just call him! Don't even wait for the follow up appt.... Tell him you've got to have it. He can call it in. Or wait till you see him 4o headaches later...
Whatever, just get it. I'd like to see you PF!
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Chris
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cootie
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Re: What the Neurologist said....
« Reply #13 on: Jun 14th, 2004, 11:08pm » |
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Seems like some docs don't give a shit what you can tell them is wrong or goin on...."they" MUST figure it out and decide even if it takes forever. Suppose malpractice crap worries don't help. Your lucky if you get your MRI results in a week.....I waited several weeks and got a call from the office nurse they were in and am just now gettin in this week to talk to the doc about it (a couple months later)......I wasn't impressed when she tried to give me her diagnoses over the phone. Yeah I hear the PT is cool.....I never went cuz I'd need it forever and my insurence only covers 10 sessions. Good luck to ya......everything is pissin me off these days crabby Pammy
Oh crap.....I'm jus a supporter.... but still can sympathize with ya here on doc shit.
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| « Last Edit: Jun 14th, 2004, 11:11pm by cootie » |
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Charlie
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Re: What the Neurologist said....
« Reply #14 on: Jun 15th, 2004, 2:38am » |
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Relaxation techniques..give us a effen break. It works for almost nothing. Bleaugh.
This guy is probably trying very hard to come up with a diagnosis that isn't CH. CH is damn frustrating to these blokes. They really do want to help but CH doesn't give them a lot of options
You need to keep after him. He needs an education on this horror.
Charlir
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Tiannia
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Re: What the Neurologist said....
« Reply #15 on: Jun 15th, 2004, 11:15pm » |
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Thanks Liz.
i signed yp to the mb and have been reading. I'll see about posting after I get a feel of what he wants to treat me for.
After reading the info that they linked about Occipital Neuralsia it does seem like I am having those as well. They say that it usually is caused by an injury of some sort. I wonder if the fast that I tense up so bad, If I have messed up the nerves and muscles on the side of my ch, cause he did say that it appears to my one sided as well.
But the thing that really confuses me is that the neuro said sweats and pain above and behind the ear in conjuntion with the eye and jaw pain is not CH. I always feel like a hand is ripping at my head. Like a thumb is in my eye and the fingers are wrapped around my jaw and the hand is trying to pull it off my head while at the same time sqeeze them together like a vice-grip.
I know that others get shadows that are more on the side of the head rather then just starting in the eye. And I know that others have talked about sweats. I can always tell if I am going to be hit really hard because I get heavy sweats. I mean like I am sitting in a steam room fully clothed for 20 mins. After the sweats then the CH hits hard and ramps fast.
Please tell me if I am wrong ang no one else has this and only gets hit behind the eye.
-Tia
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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BillyJ.
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Re: What the Neurologist said....
« Reply #16 on: Jun 16th, 2004, 3:07am » |
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Hi Traci,
Mine hits me right above my right eye,like right behind
my eyebrow.Sometimes it kind of radiates along the
side of my head.
The sweats? OH YEAH! It can be freezing and then I
start getting real hot,and then I run for the O2 and ice!!!!!
On the bright side,wouldn't it be great if they found
out that you didn't have CH at all,that what you really
have is more easily treatable or fixable?
Vibes and hugz to ya Sis,
BillyJ
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Gator
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Re: What the Neurologist said....
« Reply #17 on: Jun 16th, 2004, 4:08am » |
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Thats a load of crap, Tia. Sweating on the ch side is specifically listed as a symptom in the new IHS Classification Guide. It also states that pain can radiate to other parts of the head. I get pain in the occipital area and down into the back of my neck sometimes when it is a real bad one.
Here's the link to it. You can't print it, but you can read it and refer your docs to it. I haven't tried doing screen shots, but I bet that would work. Cluster Headaches start on page 44.
http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf
Gator
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Redd
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Re: What the Neurologist said....
« Reply #18 on: Jun 16th, 2004, 7:51am » |
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Tia my Sister in pain....
We know the beast likes to play a different tune for each of us...tell the doc he's wacked. Sending your way today...
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Prense
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Re: What the Neurologist said....
« Reply #19 on: Jun 16th, 2004, 8:33am » |
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on Jun 15th, 2004, 11:15pm, Tiannia wrote:| Please tell me if I am wrong ang no one else has this and only gets hit behind the eye.-Tia |
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I do not get sweats, nor do I get pain that far back along my head...
I do run a low grade fever during an attack ( < 100 ).
My experience in no way dictates what CH symptoms are. I'm just relating my experience.
Chris
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Lizzie2
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Re: What the Neurologist said....
« Reply #20 on: Jun 18th, 2004, 9:01pm » |
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Tia,
You may have seen this, but I just got this link in Teri's newsletter from the about.com headache site.
http://headaches.about.com/cs/education/a/ninds_occ_neur.htm
Hope that is helpful, too!
Lizz
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Tiannia
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Re: What the Neurologist said....
« Reply #21 on: Jun 19th, 2004, 1:52am » |
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Thanks Liz
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The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
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