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Title: Greetings and well met Post by Noe on Jan 27th, 2004, 12:13pm 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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Title: Re: Greetings and well met Post by thomas on Jan 27th, 2004, 12:14pm Welcome aboard, I hope you can get some help here..... :) |
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Title: Re: Greetings and well met Post by echo on Jan 27th, 2004, 12:19pm 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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Title: Re: Greetings and well met Post by aprilbee on Jan 27th, 2004, 12:25pm Welcome to our/your family! :) |
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Title: Re: Greetings and well met Post by Noe on Jan 27th, 2004, 12:25pm 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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Title: Re: Greetings and well met Post by brad267 on Jan 27th, 2004, 12:27pm Kon'nichi wa Noe, Nihongo dekimasen. Eigo, o kudasai! ;;D 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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Title: Re: Greetings and well met Post by Patrick_A on Jan 27th, 2004, 12:30pm 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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Title: Re: Greetings and well met Post by Kirk on Jan 27th, 2004, 12:33pm 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 [smiley=thumb.gif] |
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Title: Re: Greetings and well met Post by Cerberus on Jan 27th, 2004, 1:00pm 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 :D 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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Title: Re: Greetings and well met Post by Noe on Jan 27th, 2004, 1:08pm 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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Title: Re: Greetings and well met Post by Jackie on Jan 27th, 2004, 1:25pm 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... :P Again....welcome. This is a great group of people...willing to help and support 24/7. Jacks 8) |
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Title: Re: Greetings and well met Post by Noe on Jan 27th, 2004, 1:26pm 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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Title: Re: Greetings and well met Post by Giovanni on Jan 27th, 2004, 1:30pm 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/conditions/cluster/print.html Good Luck, John |
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Title: Re: Greetings and well met Post by Little Deb on Jan 27th, 2004, 1:43pm 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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Title: Re: Greetings and well met Post by Jackie on Jan 27th, 2004, 1:47pm on 01/27/04 at 13:26:42, Noe wrote:
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 8) |
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Title: Re: Greetings and well met Post by Kirk on Jan 27th, 2004, 1:47pm 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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Title: Re: Greetings and well met Post by Belle on Jan 27th, 2004, 2:01pm 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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Title: Re: Greetings and well met Post by ZAIRA on Jan 27th, 2004, 2:23pm 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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Title: Re: Greetings and well met Post by thomas on Jan 27th, 2004, 4:40pm on 01/27/04 at 13:26:42, Noe wrote:
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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Title: Re: Greetings and well met Post by Prense on Jan 27th, 2004, 7:20pm Welcome aboard Noe! Chris |
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Title: Re: Greetings and well met Post by stevegeebe on Jan 27th, 2004, 8:11pm Yes, Noe, Maybe. Somebody stop me! Welcome. Keep us posted. This place will get you through the hell. Steve G |
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Title: Re: Greetings and well met Post by KingOfPain on Jan 27th, 2004, 8:39pm Welcome Noe. If you can, try to get one of these: http://images.mooremedical.com/150x150/50105.jpg It's a non-rebreather O2 mask. If you have problems with dryness, try one of these: http://images.mooremedical.com/150x150/51742.jpg 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". http://www.gifs.net/animate/rowrow.gif |
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Title: Re: Greetings and well met Post by tsayswhy on Jan 27th, 2004, 9:26pm 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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Title: Re: Greetings and well met Post by TxBasslady on Jan 27th, 2004, 9:57pm Hi Noe, Welcome to the board. Stay with us and keep posting....let us know how you are doing. Jean |
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Title: Re: Greetings and well met Post by Charlie on Jan 27th, 2004, 10:30pm 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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Title: Re: Greetings and well met Post by RichardN on Jan 27th, 2004, 10:31pm Welcome, and more words of hope Came here in Mar, 02 and finally found a "name for the pain". Like many others I wondered,"tumor?, impending stroke?, eye/teeth problems?, sinuses?......WHAT THE #%@* is it?? for 12-14 months, and when I came here 6-8 CH per day, KIP 5-9, 20min-2hr ea. I have been PF for over a year now with only minor shadows and my 02 is always at hand for those. I take a maintenance dose of 120mg Verapamil (personally never took more than 360mg daily) Alchohol WAS a definite trigger for me......a beer, shot of brandy, or few ounces of wine would bring one on in 20-30min. I can now drink a few ounces of wine 3-4 nights a week, but still stay away from real beer (I'll drink the non-alchoholic stuff, but limit them also) All kinds of info and tricks here...........you're not alone Welcome to a great family of caring lunatics, PFDANs Richard |
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Title: Re: Greetings and well met Post by Noe on Jan 27th, 2004, 11:22pm Thank you for the kind and supportive words, folks. It's weird how the pain changes. It's unlike anything else. I imagine some kind of weird torture machine: the shadows are the background hum of the machine just being on. Everything else is sort of a dial that with every click ramps the pain up to a whole new level. It changes so fast it is weird. And then it clicks off and it's like the sun is shining through the clouds. |
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Title: Re: Greetings and well met Post by Tiannia on Jan 27th, 2004, 11:32pm Welcome Noe. Glad you found us so quickly. These guys are great and keep asking the questions we will do our best to answer you. But at this point you will have to take things one day at a time, My CH;es started This last July and have not stopped. So I keep waking up every day and hoping that they beast will decide to take a vacation. [smiley=hammer.gif] Tiannia |
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Title: Re: Greetings and well met Post by Callico_Kid on Jan 28th, 2004, 2:22pm Welcome aboard. It is awesome that you were diagnosed and given O2 so quickly! There is so much info available here for you to access. You will have to experiment to find what works for you the best. Hopefully you will only have a short cycle and be free for a long time. Jerry |
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Title: Re: Greetings and well met Post by Noe on Jan 28th, 2004, 3:43pm If I might impose, I have another question: Are there any signals that tell us that our cycle is finished? I mean, I understand that my head doesn't ache at the moment; how can I know that I am out of the woods. Just shadows today -- I'm so happy! ;;D |
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Title: Re: Greetings and well met Post by thomas on Jan 28th, 2004, 3:48pm on 01/28/04 at 15:43:18, Noe wrote:
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Title: Re: Greetings and well met Post by Mr.Happy on Jan 28th, 2004, 4:10pm on 01/28/04 at 15:43:18, Noe wrote:
There's no real way to know, Noe. Best acid test for the end of a cycle is to hammer down a cold beer real fast. You should know right quick like if you're out of the woods. Best to keep your O2/meds handy, tho. Bottoms up, RJ This is not necessarily a recommended idea, just a potential one...... |
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Title: Re: Greetings and well met Post by Noe on Jan 28th, 2004, 9:54pm Ouch. I think I'll hold off on that one a bit. The idea of doing anything that might start the ball rolling again still kind of creeps me out. And yet another question to which I cannot find the answer: Does anyone ever get the associated symtoms of the cluster, without the cluster itself? (Stuffed up left ear, runny left eye, runny left sinus, light sensitivity in the left eye, but no pain at the pain point.) It's not that I'm complaining about this; I'm trying to figure out what all of this means. I can't really ask the doctor's here. The quality of care over here is pretty good, but a) my Japanese is pretty limited in area of medicine, and b) Japanese doctors (well, most Japanese to be honest) seem pathalogically incapable of answering questions and giving out information. |
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Title: Re: Greetings and well met Post by t_h_b on Jan 28th, 2004, 10:39pm Quote:
That sounds like a shadow headache to me, except I never had ear problems. |
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Title: Re: Greetings and well met Post by BobG on Jan 29th, 2004, 3:11pm on 01/28/04 at 21:54:17, Noe wrote:
Phantom CH - click below for a string from the archive http://www.clusterheadaches.com/wwwboard/messages/59810.html Todd (article on “Phantom CH”…painless headaches Aug. 10, 2000) |
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Title: Re: Greetings and well met Post by Pinkfloyd on Jan 29th, 2004, 4:29pm on 01/28/04 at 21:54:17, Noe wrote:
You may want to try contacting a friend of mine. He's been not only, suffering from and researching clusters for a long time, but has spent years in Japan, working with doctors there and trying to educate them about this condition. His name is Mario and the last email addy I had for him was: newyouz@hotmail.com Tell him Bob Wold sent you and be sure to put "clusters" in the subject box. Hopefully he can help you navigate through the medical system there. If that email is no longer any good, send me a note and I'll track him down for you. BobW (PF) |
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