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Topic: Greetings and well met (Read 745 times) |
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Noe
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Obsession is the Engine of Progress
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Greetings and well met
« on: Jan 27th, 2004, 12:13pm » |
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First of all, I want to thank whoever is in charge of this show for the wonderful site. It has been a big help, if not a little frightening.
I was only diagnosed with CH yesterday. I have had tiny little pinpoint headaches for years that I had alwasy thought were sinus headaches. In this last month, as the weather started changing, I began to get them every day. Finally, last sunday I was -- I don't know quite how to describe it -- demolished by a series of headaches on the left side of my head. They are incredibly focussed -- a small point just above my left eye -- but when they are in full bloom it is as though my optic nerve is being slowly drawn out with a pair of plyers. At one point I had a sort of waking dream that i was bleeding, because nothing that painful could be bloodless. In any case, I'm sure you all understand.
On Monday morning, I thought I was out of the woods, but then I was hit again. I finally broke down and stumbled to the clinic, fairly certain that I was experiencing an anyeurism of some sort. When I arrived a the doctors office, my left eye was weeping continuously, and my nose was running, and it was all I could do to keep from writhing around the room, speaking in tongues. I couldn't get around thoughts of trepanation.
At this point, I should point out that I am an American living in Tokyo. This means tht I had to be interviewed by a doctor in Japanese. Needless to say, my Japanese language skills weren't at their best at the time.
The Doctor took me to the back room and told me I had something called "Cluster headaches" -- an affliction that I was previously unacquainted with. She could only tell me the name in English; she couldn't tell me what they were. What really set the alarm bells to ringing was the "you poor bastard" looks she kept giving me.
In any case, they put me on O2, and after a bit, I was miraculously cured. I was given some medicine and sent home. Total cost of visit, O2, and medicine: $15. State subsidized insurance, whee!
In any case, the doctor's attitude made me nervous, so looked on the internet, and here I am. Nice to meet you all.
Needless to say, I wasn't as far out of the woods as I thought. I had shadows all day today -- before yesterday I had always called them "echoes" and tonight I had another biggie. Tomorrow I go for my own O2 bottle. I'm not sure whether I will breathe the O2, or just hit myself over the head with the bottle. I think I'll keep my options open.
As nice as it is to meet you all, I would rather that I had never had this experience. The thought that this could be a regular feature in my life is both frightening and depressing.
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thomas
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Re: Greetings and well met
« Reply #1 on: Jan 27th, 2004, 12:14pm » |
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Welcome aboard, I hope you can get some help here..... 
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echo
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Re: Greetings and well met
« Reply #2 on: Jan 27th, 2004, 12:19pm » |
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Glad to read that your neuro was able to identify the ailment. Hopefully the 02 and meds will help to keep the beast at bay. Be prepared for med and dose adjustments to find just the right combination.
Welcome to the MB
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aprilbee
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Re: Greetings and well met
« Reply #3 on: Jan 27th, 2004, 12:25pm » |
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Welcome to our/your family!
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Noe
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Obsession is the Engine of Progress
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Re: Greetings and well met
« Reply #4 on: Jan 27th, 2004, 12:25pm » |
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Yep. In retrospect, I realize that I was pretty lucky that my doctor was paying attention. I would have easily believed that it was a sinus infection of some sort, what with the associated nasal congestion.
As for getting help from the site, the biggest help was showing it to my wife. I've been, for want of a better word, boogying, all over the apartment, mumbling to myself for days and touching that spot over my eye with a weird jerky motion. It was like I was having a psychotic episode. It was really freaking her out, but for somereason I have trouble controlling myself. It's like my body is looking for something, anything to make that feeling stop.
It's like some weird behavioural conditioning. Aversion therapy with no target of aversion. I would do anything to avoid feeling that way, but nothing I do seems to help. Ouch, ouch, ouch.
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brad267
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Re: Greetings and well met
« Reply #5 on: Jan 27th, 2004, 12:27pm » |
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Kon'nichi wa Noe,
Nihongo dekimasen. Eigo, o kudasai! 
The lights are always on here, and we don't lock our doors. Stop by anytime you'd like.
You're going to need a Neuro..... Preferably one with an internet connection, so you two can collaborate quickly and not get bogged down by the scientific words.... You know the drill, if you already are living there....
Take Care,
Brad
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Patrick_A
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Re: Greetings and well met
« Reply #6 on: Jan 27th, 2004, 12:30pm » |
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Hello Noe, Glad you was able to find us. Read and learn! You can live a normal life, you'll just have to learn to adapt a bit. Lots of medications work for people here. The cocktail that worked for me was a 60mg taper of Prednisone and 120mgs of Verapamil twice daily. That knocked my CH's out and i have now been painfree and med free for 5 months.
Good luck, Patrick
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Kirk
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Re: Greetings and well met
« Reply #7 on: Jan 27th, 2004, 12:33pm » |
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Welcome.
Sounds like you made a good start on getting a handle on the beast.
getting the meds adjusted should go a long ways towards helping.
TTFN 
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Cerberus
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Re: Greetings and well met
« Reply #8 on: Jan 27th, 2004, 1:00pm » |
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Welcome Noe,
Its rather disturbing to hear that a Tokyo doctor figured out what this is more quickly than most American Physicians. In any event, read up as much as you can, get a neurologist and suck alot of O2 when getting hit. It leaves the fewest side-effects and feels way better than hitting yourself with the bottle or trying to eat it 
Stick around and invite the wife to have a look see too, she'll be glad she did. You might want to keep that Tokyo doc as well.
Ramon
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Noe
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Obsession is the Engine of Progress
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Re: Greetings and well met
« Reply #9 on: Jan 27th, 2004, 1:08pm » |
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The doctors over here are pretty good, although the facilities that they have to work with vary in quality a great deal. The Japanese took an unusual and very intelligent tack, if you ask me: instead of socializing the medicine, they socialized the insurance, with an option for private insurance. It's good because the care-givers aren't having to make decisions on the basis of insurance company decisions, and they still set their own prices.
BTW: My wife says that one of my pupils (the one of the affected side of my head) is smaller than the other. Is this normal, or should I be worried?
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Jackie
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Re: Greetings and well met
« Reply #10 on: Jan 27th, 2004, 1:25pm » |
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Hi Noe....welcome to the board and welcome to your wife too...
Blake's (my hubby) pupils do lots of strange things during an attack. We've never worried about it.
How lucky to get such a quick diagnoses...many go for years with no real help. Also the 02 is an ace in the hole for you...number one abortive for the masses around here. Did the doctor give you any other meds?
There is a ton of good information here and on OUCH....ya got a lot of reading to do... 
Again....welcome. This is a great group of people...willing to help and support 24/7.
Jacks 
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Noe
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Obsession is the Engine of Progress
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Re: Greetings and well met
« Reply #11 on: Jan 27th, 2004, 1:26pm » |
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And one more question, if I may: How likely is it that these things are going to continue or become even more painful? I'm beat already. The things I'm reading are scary and not at all encouraging.
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Giovanni
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Re: Greetings and well met
« Reply #12 on: Jan 27th, 2004, 1:30pm » |
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Hi Noe,
Yes normal for your clusterside pupil to be smaller--look here:
Cluster headaches are characterized by a specific type of pain and pattern of attacks. Keeping a headache journal is a great way to track the location and severity of the pain, the duration of the pain, any medications taken and any possible headache triggers.
A physical exam also may help your doctor detect signs of a cluster headache. One of your pupils may appear smaller than the other or your eyelid may droop.
Here's a link:
http://www.ucsfhealth.org/adult/medical_services/neuro/headache/conditio ns/cluster/print.html
Good Luck,
John
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Little Deb
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Re: Greetings and well met
« Reply #13 on: Jan 27th, 2004, 1:43pm » |
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Welcome to Clusterville!!
There is a section for supporter's too, that you may direct your wife to.
Glad you found us!!
Little Deb
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Jackie
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Re: Greetings and well met
« Reply #14 on: Jan 27th, 2004, 1:47pm » |
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on Jan 27th, 2004, 1:26pm, Noe wrote:| And one more question, if I may: How likely is it that these things are going to continue or become even more painful? I'm beat already. The things I'm reading are scary and not at all encouraging. |
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I really don't think any of us can answer that. We have some here who have been in remission for years. We have some who skip cycles. There are also some that go chronic...bless their hearts.
For us (my chronic husband and myself) the key has been to educate ourselves. We've tried many different meds. and combos. Finally after years we've come up with a combo that has left him mostly pain free since August.....so there is always light at the end of the tunnel. There are also 'home remedies' that can help....hot showers, ice packs, hot strong coffee at onset, strenuous exercise at onset. You'll have to see what works best for you.
Yes, it is scary but please don't be discouraged. There are things that can help you.....the people here will help you.
Did you doctor give you any prevent. meds.?
Hang in there....
Jacks
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Kirk
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Re: Greetings and well met
« Reply #15 on: Jan 27th, 2004, 1:47pm » |
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Tricky question Noe. If you are Episodic. It could last a week to several months. But you'll learn to deal with it.
If you are chronic.. It doesn't really end. You can learn to control it and lead a normal life.
In both cases you will have to adjusts your meds and life style to control your condition.
TTFN
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Belle
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Re: Greetings and well met
« Reply #16 on: Jan 27th, 2004, 2:01pm » |
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Hey Noe!
Sorry to have to welcome you to this board, but you've found a wonderful place. Take in all you can and never be afraid to ask a question.
Take care and wishing you pain free days soon.
Belle
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ZAIRA
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Re: Greetings and well met
« Reply #17 on: Jan 27th, 2004, 2:23pm » |
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Hiya, happy if you found us, Noe, this place is the best thing about CH, all the support, knowledge, love around here! Read..... and read..... In the meantime...... WELCOME IN THIS VALE OF TEARS........ regards, Zaira 
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Love yourself, Love others, Love often, Forever!
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thomas
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Re: Greetings and well met
« Reply #18 on: Jan 27th, 2004, 4:40pm » |
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on Jan 27th, 2004, 1:26pm, Noe wrote:| And one more question, if I may: How likely is it that these things are going to continue or become even more painful? I'm beat already. The things I'm reading are scary and not at all encouraging. |
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As far as how long they will last, your guess is as good as mine... If they will get worse, look over to the left and read the kip scale........ my first two years were pretty easy, compared to my last 8-9. Mine got worse in the third year, that's when I had to choose between taking a rather long trip out of my window, or going to the doc. I obviously chose the doc. My cycles were a lot shorter in the early days and have gotten progressively longer, except for this last one, it only lasted 3 weeks,......... that was AWESOME........ let me tell you, I also didn't use imitrex during this last cycle, This is a touchy subject....... some of us have had longer and more intense cycles using imitrex, so for ME if there is another alternative to imitrex, I will take it, sorry I got so long winded, but if you ever need to talk to some one, I'm usually around. Oh yeah, I forgot, girl docs rule. I was correctly diagnosed by a female Dr. also........
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| « Last Edit: Jan 27th, 2004, 4:42pm by thomas » |
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Prense
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Re: Greetings and well met
« Reply #19 on: Jan 27th, 2004, 7:20pm » |
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Welcome aboard Noe!
Chris
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stevegeebe
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Re: Greetings and well met
« Reply #20 on: Jan 27th, 2004, 8:11pm » |
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Yes, Noe, Maybe.
Somebody stop me!
Welcome. Keep us posted. This place will get you through the hell.
Steve G
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KingOfPain
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Re: Greetings and well met
« Reply #21 on: Jan 27th, 2004, 8:39pm » |
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Welcome Noe.
If you can, try to get one of these:
It's a non-rebreather O2 mask.
If you have problems with
dryness, try one of these:
It's what we call a bubbler.
AKA a humidifier.
Hang around, you just found
the most caring, compassionate
folks & best place to be.
As we say: "Grab an oar & start rowing/paddling".
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| « Last Edit: Jan 27th, 2004, 8:45pm by KingOfPain » |
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We swallow greedily any lie that flatters us, but we sip only little by little at a truth we find bitter.
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Real friendship is shown in times of trouble; prosperity is full of friends. - Euripides
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tsayswhy
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Re: Greetings and well met
« Reply #22 on: Jan 27th, 2004, 9:26pm » |
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Hello Noe
you use the words frightening and depressing!!
frightening yes very much so until you understand it all and then it's not so scary
depressing yes it can be but we are here for you when ever you need a friend
good luck and wishing you pf....tari
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TxBasslady
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Re: Greetings and well met
« Reply #23 on: Jan 27th, 2004, 9:57pm » |
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Hi Noe,
Welcome to the board.
Stay with us and keep posting....let us know how you are doing.
Jean
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Charlie
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Re: Greetings and well met
« Reply #24 on: Jan 27th, 2004, 10:30pm » |
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Welcome aboard Noe.
You'll find a lot of good ideas and ways to deal with this horror and lots of friends.
These things take no prisoners. It's a miserable disease and if preventives or abortives fall down on the job, you have to deal with it the best you can. I can tell you that they can and do go away. It's been 12 years since my last attack. I had them for 22 years however but had some good medical help and lots of good luck.
Here is a link to a technique that worked well for me:
http://www.netsync.net/users/charlies/
Good luck and let us know how you're doing.
Charlie
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