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Title: Hello Everyone Post by imfareware on Jan 4th, 2008, 7:05pm Hi, my name is Mike, I'm 46 going on 47 in March. I started getting my headaches back in 1986. I remember my first one. I thought it was jet lag, I was back home from Korea (US Army) visiting my parents. I had a few beers and went upstairs, I thought my eye was going to blow out of my head. I had a few more for the following month. Since then its been like clock work, every year between November and March (the last time 2006). Doctors gave me nothing in the military, numerous CT scans and MRI's, seen some abnormality activity, but I wasnt bleeding, and I was still breathing. Results: Fit for duty. After living with these for the past 20 years, I got use to them. Developed a routine when they set in, and my family supported me with their patience and quietness. 2 years ago, I would say that I had the worse ones ever. I seen a neurologist that specialized in headaches. He gave me the 5 day steroid treatment: 5 pills, 4 pills etc., all they did was prolong the cycle of the headache. He wanted me to try the steroid again so I did. Usually my cluster cycle last 4 - 5 weeksk, the last 2 being the worst, then they are gone. With the second steriod treatment, it seems like it put the cycle into remission. It lasted 10 weeks and was some of the worst pain that I ever experienced. My problem?? I have the feelings of preonset of the headaches. I had a couple minor ones the past week. Didnt sleep last night at all (to scared of waking up in pain). I made an appointment with my doctor for this Wednseday to get some more Lortabs to ease the body. Nothing has worked short of 100% oxygen. They wont give me a tank. We have a pain management clinic about 6 miles away (they tell me to come in 24/7), if you all know, once the pain sets in you dont want to do anything. Does anyone have any advise for me? I'm in tears beacause I dont want the pain. I did retire from the military and now I am a computer engineer with a global bank (sounds important). I have a son thats a senior in High School, and one thats finishing up 8th grade. I bought a little Bicheon Frise that sits by me and I love the crap out of (makes my wife Jealous). Once again, Hello, and HELP! |
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Title: Re: Hello Everyone Post by Jonny on Jan 4th, 2008, 7:47pm The doc wont give you a script for 02? Fuck him!!!.....rent a tank of welding 02 (its the same shit) and I will send you a converted medical regulator for free. Hows that for a welcome home! ;;D Most docs suck! >:( |
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Title: Re: Hello Everyone Post by GrandPotentate on Jan 4th, 2008, 9:25pm Find a new doctor who is more concerned in working on this with you. Many of us have suffered through misdiagnoses and ineffective drugs. It is tough to find a good doc, but worth the effort. My first prescrip for O2 was from a GP, who saw how ineffective the head guy's dope was. There are some risks with O2, and some docs might be a little nervous about it. But to my unmedical mind, it sure seems a lot better than many of the alternatives. Read up! |
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Title: Re: Hello Everyone Post by Linda_Howell on Jan 4th, 2008, 9:25pm Forget the narcotics. That won't help. They'll give you rebound headaches from hell, make you so doped up you won't be able to fight the beast and you'll have a good chance of becoming become addicted. Quote:
Who won't? Print this out and take it right back to that Doctor and shove it in his face. If he still won't budge, take Jonny's advice above. http://www.ouch-us.org/medications/oxygen/o2info.shtml Linda |
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Title: Re: Hello Everyone Post by DennisM1045 on Jan 5th, 2008, 8:07am Hi Mike, Welcome to the family! My Dr wouldn't perscribe O2 either. I had to get a referal to a Neurologist 1st. Then I got the script. Push for a referral. Good luck... -Dennis- |
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Title: Re: Hello Everyone Post by Bob_Johnson on Jan 5th, 2008, 8:13am 1. Search the OUCH site (button on left) for a list of recommended M.D.s. 2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice. 3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate. 4. http://www.achenet.org On-line screen to find a physician. 5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician. ============================== http://www.plainboard.com/ch/chtherapy.pdf Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002) |
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Title: Re: Hello Everyone Post by Guiseppi on Jan 5th, 2008, 12:02pm Welcome to your new second home. I get so frustrated at how often I hear the docs won't prescibe 02, here's some percocet, some vicodain, maybe some codeine, I'll write you scripts for those like they're candy.......but the safest, most effective, CHEAPEST treatment....sigh.. [smiley=huh.gif] rant done ;;D Anyways...welocme to the board. I'm 48, been fighting these buggars about 30 years, and am episodic like you, meaning we get breaks of up to a year between cycles. The best approach is a 2 pronged approach. 1: a good preventative. This is a medication we take while we are on cycle, which reduces the frequency and the intensity of your headaches. I use lithium at 1200 mg a day. Other popular prevents are verapamil, a blood pressure medication, at doses as high as 980 mg a day, and topomax, also called dopeymax because of some of its side effects!! 2: a good abortive. A headache has started, now what. First line abortive must be oxygen. If your doc won't write it move on to a new doc or take Johnny's advice, he wasn't shooting his mouth off you say the word and the equipment he descibed will be enroute. Other poular abortives are imitrex injectables and nasal sprays, pills take too long to get into your system. Read the link Johnson gave you and print it out for your doc, it details many of the available treatments. For now try chugging coffee or an energy drink, one containing caffeine and taurine, at the first sign of an attack. Many can abort or at least substantially reduce an attack that way. Try taking melatonin at bedtime. It's an over the counter available at health food stores, I get mine at Costco, really cheap. 9-18 mg before you go to bed, helps stop the nite time hits for many. You have much reading to do, you'll find in very short order you'll know much more then your doctor. If you rely solely on your doctor for relief you will needlessly suffer, we HATE that. You're not alone anymore. Guiseppi |
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Title: Re: Hello Everyone Post by imfareware on Jan 5th, 2008, 2:11pm WOW, I am so overwelmed!! Bless everyone of you. After suffering with these demons for 20 years and dealing with Doctors, now I am prepared!!! I will be doing so much research and reading so that when I go see my Doctor this Wed. I'm going to tell him what I want. Thank you all SO MUCH!!! You all have a new friend now! :-* |
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Title: Re: Hello Everyone Post by mummymac on Jan 5th, 2008, 2:17pm Mike welcome home [smiley=hiya.gif] |
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Title: Re: Hello Everyone Post by Ten on Jan 5th, 2008, 3:16pm Hang in there bud these guys will have you sorted before you can say boo to a goose. Welcome to the pack. :) |
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Title: Re: Hello Everyone Post by Rosybabe on Jan 5th, 2008, 5:41pm Welcome home Mike!! The light is always on whenever you need an ear to vent. The guys have given you lots of good info, now is your turn to go a beat the hell of the Doc ;) to get your O2. Take care and come back and let us know how you are doing. pain free wishes!! Rosy. |
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Title: Re: Hello Everyone Post by RichardN on Jan 6th, 2008, 12:43am Welcome Mike and Thanks for your Service Another vote for 02 here. I can't use Imitrex, so it's my only abortive . . . usually works in minutes if used early-on in the attack. You've found the calvary dude . . . and all here know the enemy all too well. This place gave me my life back. Be Safe, PFDANs Richard |
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Title: Re: Hello Everyone Post by rocketman3104 on Jan 6th, 2008, 3:59pm Hey Mike, welcome. Fellow ex-Army. Docs wouldn't do any thing for these. I started getting them when I got back from Desert Storm. Army docs just kept giving me Motrin (HAHA). Before I found out what these were the only thing I found that would help me was rapid breathing. Not hyperventilation, but fast DEEP breaths in and out. I would do them in rythym and it would sometimes abort. I guess it was kind of self oxygenation to an extent. Now, thanks to my wife finding this site and getting the correct diagnosis, O2 and Imitrex are my first line of defense. Glad you found us. Hope your cycle ends soon! |
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Title: Re: Hello Everyone Post by Linda_Howell on Jan 6th, 2008, 9:16pm Mike, we will expect a full report and in triplicate, when you get back from the Doc. on Wed. you hear? ;;D Hope you're reading a lot here in the mean-time. Any more questions you have, we're here. Linda |
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Title: Re: Hello Everyone Post by imfareware on Jan 9th, 2008, 3:19pm Well, I got my script for O2, I called Buffalo Oxygen and now I see if Tricare (Retired Military) will pay for it. I'll keep ya posted. This might be one out of pocket expense. Buffalo Oxygen will call me back. The clock is ticking. |
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Title: Re: Hello Everyone Post by Guiseppi on Jan 9th, 2008, 3:23pm Here's hoping the 02 works as well for you as it has for me! It's been a true sanity saver not having to live in fear of the damned things. Even if it's out of pocket it's not bad. Before I got Kaiser to cover it I was renting e-tanks for $4.50 a month, refills were about $13.00. Good luck with it! Guiseppi |
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Title: Re: Hello Everyone Post by tessistired on Jan 10th, 2008, 10:07am Hey there Mike! Let me be the next to welcome you to the family here! Very glad to see you got your o2 script...I just hope it doesnt take too long for you to get it like it did for me. You just have to be pushy with these people to get what you need. Keep us updated please and I wish nothing but the best for you. Many Blessings to you and yours! PAIN FREE DAYS AND NIGHTS Tess |
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Title: Re: Hello Everyone Post by NJRik on Jan 10th, 2008, 10:54am I'm retired Navy, Tricare will pey for your O2 just fine. |
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Title: Re: Hello Everyone Post by imfareware on Jan 10th, 2008, 7:03pm Still Waiting for Buffalo Oxygen to call me, I'll try and remember to call them tommorrow morning. |
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Title: Re: Hello Everyone Post by LeLimey on Jan 13th, 2008, 8:39am Any news yet Mike? |
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Title: Re: Hello Everyone Post by Mark_Morris on Jan 14th, 2008, 9:27am Hi Mike Are you in Buffalo? |
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Title: Re: Hello Everyone Post by imfareware on Jan 14th, 2008, 9:31am As of this morning I am still fighting with the oxygen company and Tricare. Mark, I live in East Amherst, are you close? |
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Title: Re: Hello Everyone Post by Mark_Morris on Jan 14th, 2008, 11:54am I was also in Korea (USAF) at Osan AB in 1981. Could it be the water? I am going to the Dent Tower and am seeing a Dc. Frost for treatment although, mixed results for now. Imitrex is my only armor as of now. |
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Title: Re: Hello Everyone Post by LeLimey on Jan 14th, 2008, 1:20pm Hi Mark and I'mfareware I'm going to post this on both threads of yours so you both catch it. I spend a lot of time in Syracuse these days and there are two other sufferer's at least near you, Charlie and Naka. There are quite a few in that region of NY and just over the other side too in Canada so I was planning on organising a get together at Niagara this summer. Keep an eye on the meetings board 'cos it'll be late July early Aug - I'm looking forward to hopefully meeting you both then too! Helen |
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Title: Re: Hello Everyone Post by imfareware on Jan 14th, 2008, 1:21pm Small world, I went to Dent with my last bout of CH, they put me on a steriod pack that I took 5 pills one day, 4 the next, etc.. IT DIDNT WORK!! The headaches subsided a bit while I was on the Steriods, but after a week when the treatment was over, the headaches came back with VENGENCE!! I was laid up for over 6 weeks. Call VNA (Visiting Nurses Association) 716-630-8000. They are delivering my O2 this afternoon!!! They acceptm the Tricare Standard insurance. I can cry, FINALLY I am getting something that will help!! Thank you all on this site for the articles I gave my Doctor!! |
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Title: Re: Hello Everyone Post by imfareware on Jan 14th, 2008, 1:30pm on 01/14/08 at 11:54:52, Mark_Morris wrote:
In 1981 I was up at Camp Stanton in the DMZ (Air Cav), I spent 1896 - 1990 at Camp Humphrey's right outside Osan. Some friends went back a few years ago and they said they didnt recognize the place it changed so much. It was either the water or the rag weed (lol). Keep me informed about a get together, maybe we can do a BBQ at my house if you would all like, I'd love to see you all this summer! I'll bring the O2!!!! |
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Title: Re: Hello Everyone Post by LeLimey on Jan 14th, 2008, 1:59pm LOL Look at you, the new prince of airbags!! [smiley=laugh.gif] Oh you are going to love it! You've used it before haven't you? |
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Title: Re: Hello Everyone Post by imfareware on Jan 14th, 2008, 3:06pm The new prince of airbags aye? LOL. When I was in the military I use to go sit in the cockpits and breath the O2 before the pilots showed up. |
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Title: Re: Hello Everyone Post by imfareware on Jan 14th, 2008, 5:06pm They delivered my O2, I got 2 masks that look like a piece of crap, but thats all they had. No flapper valves to keep the outside air out. I need to do some alterations on them. Once again, thank you all!! |
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Title: Re: Hello Everyone Post by Mark_Morris on Jan 15th, 2008, 7:29am I had about the same results as you from the Dent Tower program. There was a doctor listed from the OUCH website that has an office in Amherst. Can't quite remember the name. I may see if I can go to him if Dr. Frost can't/won't help. I would love to get together with you anytime. I grew up on Glen Ave in Wmsvl. went to Bishop Neumann HS and still have many friends and family there. I work at the old Bristol Myers Squibb facility (now CPL-Niagara) at the end of the 198. Maybe we already know each other? |
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Title: Re: Hello Everyone Post by Mark_Morris on Jan 15th, 2008, 10:16am That Amherst doctor's name from the OUCH recommended list is Peter Kinkel. He is listed as a Participating Specialist on Independant Health's website. He is the only one from the Buffalo area. Anyone ever heard of or go to him? |
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Title: Re: Hello Everyone Post by imfareware on Jan 15th, 2008, 12:31pm I never heard of him, I had a Chinese doctor. Tell them to give you O2! Then call the VNA. |
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Title: Re: Hello Everyone Post by Mark_Morris on Jan 18th, 2008, 7:56am Hi Mike I am going in for what I think will be my second trearment of steroids this morning. The last three days have been better for me. A constant shadow at from 1 to 3 Kip scale, which is not bad. I will keep you posted as to what happens... |
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Title: Re: Hello Everyone Post by imfareware on Jan 18th, 2008, 7:42pm Hang in there buddy, the O2 has helped me keep them away. I am actually on my 3rd Blue right now. I may pay for it later, but it tastes so good!! Let me know how the steriods go, good luck! |
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Title: Re: Hello Everyone Post by Mark_Morris on Jan 19th, 2008, 10:57am Alcohol is a trigger for me. If I can drink more than a sip of beer, I will know my episode is over. No second treatment yesterday. I got my refillable Imitrex perscriptions and made an appt. for July. I'm wondering if the steriods have taken care of the problem (for now) or if the headaches will reachieve thier power after they wear off. I'm comfortable with where it stands today. Tomorrow may be a different story. Do you bowl at Transit Lanes? |
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Title: Re: Hello Everyone Post by imfareware on Jan 19th, 2008, 4:19pm I havent been bowling in so long its embarassing. Didnt they close the Transit Lanes down and make some Golf/Sports Bar there on the corner of Transit and Sheridan? My kid told me the Transit Lanes are open. I live about 4 miles down Transit from there. Great news for the headaches!! Mine are almost over, they have been less severe, I had 2 little ones today, that the O2 handled before they kicked in. |
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Title: Re: Hello Everyone Post by Jonny on Jan 19th, 2008, 6:12pm on 01/19/08 at 16:19:07, imfareware wrote:
Is that a farewell speech or will you be sticking around to help row this boat? |
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Title: Re: Hello Everyone Post by vietvet2tours on Jan 19th, 2008, 7:08pm on 01/19/08 at 18:12:01, Jonny wrote:
Yer a droll mofo [smiley=crackup.gif] Potter |
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Title: Re: Hello Everyone Post by imfareware on Jan 20th, 2008, 8:22pm Dont worry, I'm not going anywhere!! Pretty soon you will get sick of me. [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] |
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Title: Re: Hello Everyone Post by LeLimey on Jan 21st, 2008, 4:11am on 01/20/08 at 20:22:21, imfareware wrote:
Now that is good to hear!!! ;;D |
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Title: Re: Hello Everyone Post by Mark_Morris on Jan 21st, 2008, 7:32am Mike, that is great news. Okay, you don't bowl... What do you do (for fun)? |
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Title: Re: Hello Everyone Post by imfareware on Jan 21st, 2008, 1:08pm I bowl, I was born in Cheektavegas!! I just really suck at bowling (blame it on my back). I dont have fun, my wife wont let me. :P I lay around and piss off my wife when I'm not working. Thats what I do for fun! |
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Title: Re: Hello Everyone Post by Mark_Morris on Jan 21st, 2008, 1:34pm Cheektowaga Central or Maryvale alum? |
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Title: Re: Hello Everyone Post by LeLimey on Jan 21st, 2008, 1:35pm on 01/21/08 at 13:08:16, imfareware wrote:
Hang on - I'm getting a message through on the psychic hotline - your name is "Dave" or "David" isn't it?! ;;D |
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Title: Re: Hello Everyone Post by imfareware on Jan 21st, 2008, 4:12pm LOL, John F. Kennedy!! SLoan, Cheektawoga UFD!! My name is Mike. I came home early to watch the Buffalo Sabres play Pheonix in hockey (we're already down 1), and my wife is pissed. LOL We need to hook up and do some bowling Mark! |
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Title: Re: Hello Everyone Post by Mark_Morris on Jan 22nd, 2008, 7:19am She's pissed about the score or you being home "having fun"? |
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Title: Re: Hello Everyone Post by Mark_Morris on Jan 22nd, 2008, 11:56am Do you remember an staff member named Kochabuki or something. He ran the Cheektowaga Recreation softball leagues in the summer for years. He was a bit of a grouch if I recall correctly? |
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Title: Re: Hello Everyone Post by imfareware on Jan 22nd, 2008, 6:02pm Killer Kazabooki was my gym teacher, he was one mean SOB. He was the Varsity Football coach for a long time also, shit, he's got to be about 235 years old now. LOL |
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