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Topic: Hello Everyone (Read 1481 times) |
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imfareware
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Hello Everyone!!
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Hello Everyone
« on: Jan 4th, 2008, 7:05pm » |
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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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Pain is temporary, Love is Permanent
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Jonny
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Re: Hello Everyone
« Reply #1 on: Jan 4th, 2008, 7:47pm » |
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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! 
Most docs suck! 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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GrandPotentate
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mmmmmmmmmm
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Re: Hello Everyone
« Reply #2 on: Jan 4th, 2008, 9:25pm » |
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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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Jon
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Linda_Howell
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Re: Hello Everyone
« Reply #3 on: Jan 4th, 2008, 9:25pm » |
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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:| They wont give me a tank. |
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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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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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DennisM1045
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Re: Hello Everyone
« Reply #4 on: Jan 5th, 2008, 8:07am » |
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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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Bob_Johnson
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Re: Hello Everyone
« Reply #5 on: Jan 5th, 2008, 8:13am » |
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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.
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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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Bob Johnson
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Guiseppi
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Re: Hello Everyone
« Reply #6 on: Jan 5th, 2008, 12:02pm » |
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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..  rant done
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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imfareware
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Hello Everyone!!
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Re: Hello Everyone
« Reply #7 on: Jan 5th, 2008, 2:11pm » |
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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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mummymac
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Re: Hello Everyone
« Reply #8 on: Jan 5th, 2008, 2:17pm » |
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Mike welcome home
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Tanya
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Ten
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Re: Hello Everyone
« Reply #9 on: Jan 5th, 2008, 3:16pm » |
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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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"Once more into the breach dear friends"
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Rosybabe
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Re: Hello Everyone
« Reply #10 on: Jan 5th, 2008, 5:41pm » |
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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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RichardN
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Re: Hello Everyone
« Reply #11 on: Jan 6th, 2008, 12:43am » |
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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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I can live with the beast as long as I don't have to "dance" with the bastard.
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rocketman3104
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Re: Hello Everyone
« Reply #12 on: Jan 6th, 2008, 3:59pm » |
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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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Paul
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Linda_Howell
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Re: Hello Everyone
« Reply #13 on: Jan 6th, 2008, 9:16pm » |
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Mike, we will expect a full report and in triplicate, when you get back from the Doc. on Wed. you hear?
Hope you're reading a lot here in the mean-time.
Any more questions you have, we're here.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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imfareware
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Hello Everyone!!
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Re: Hello Everyone
« Reply #14 on: Jan 9th, 2008, 3:19pm » |
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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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Pain is temporary, Love is Permanent
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Guiseppi
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Re: Hello Everyone
« Reply #15 on: Jan 9th, 2008, 3:23pm » |
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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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tessistired
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Re: Hello Everyone
« Reply #16 on: Jan 10th, 2008, 10:07am » |
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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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NJRik
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Re: Hello Everyone
« Reply #17 on: Jan 10th, 2008, 10:54am » |
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I'm retired Navy, Tricare will pey for your O2 just fine.
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imfareware
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Hello Everyone!!
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Re: Hello Everyone
« Reply #18 on: Jan 10th, 2008, 7:03pm » |
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Still Waiting for Buffalo Oxygen to call me, I'll try and remember to call them tommorrow morning.
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Pain is temporary, Love is Permanent
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LeLimey
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Re: Hello Everyone
« Reply #19 on: Jan 13th, 2008, 8:39am » |
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Any news yet Mike?
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Mark_Morris
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Re: Hello Everyone
« Reply #20 on: Jan 14th, 2008, 9:27am » |
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Hi Mike
Are you in Buffalo?
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imfareware
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Hello Everyone!!
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Re: Hello Everyone
« Reply #21 on: Jan 14th, 2008, 9:31am » |
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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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Mark_Morris
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Re: Hello Everyone
« Reply #22 on: Jan 14th, 2008, 11:54am » |
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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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LeLimey
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Re: Hello Everyone
« Reply #23 on: Jan 14th, 2008, 1:20pm » |
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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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imfareware
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Hello Everyone!!
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Re: Hello Everyone
« Reply #24 on: Jan 14th, 2008, 1:21pm » |
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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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Pain is temporary, Love is Permanent
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