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Topic: Hello from the Niagara River (Read 431 times) |
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Mark_Morris
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Hello from the Niagara River
« on: Jan 11th, 2008, 8:15am » |
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Hi Everyone
My name is Mark Morris, I am 50 years old, and have had cluster episodes for about twenty years now. They last for about 6 to 8 weeks and then go into remission for about four years. Usually in the fall (a little later in the year this time) and mostly during the day. They seem to grow in intensity each episode but I could be wrong. This one seems particularly vicious but thats what I thought the last time too. I take Imitrex tablets from my regular Dc and have started seeing a headache specialist that gave in an infusion of prednisone and then a weeklong oral prednisone program that I don't think worked very well. I had a monster the night of the infusion and have a one or two each day since. I need a presciption for 6mg Imitrex injections but have only gotten free samples from my regular Dc and now she won't give me a prescription because I am seeing the specialist. I have to ask him for it but getting ahold of him has been difficult. I don't see the specialist until next Thurs. I will be out of tablets covered by my medical insurance and injections by then at this rate. Anyway, Thanks for being here and thanks for the incredible amount of info provided.
Mark
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rocketman3104
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Re: Hello from the Niagara River
« Reply #1 on: Jan 11th, 2008, 11:28am » |
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Mark, First off welcome to the family. Sorry you had to find us. Print out the oxygen information and give it to your docs. O2 is a first line offensive for most of us. It will abort most of mine if I can get to it fast enough. High flow and a non re-breather mask is the way to go.
It does seem that each episode gets worse than the last one. I hope your cycle ends soon.
Alot of great people here and alot of great info. Once again Welcome.
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Paul
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rocketman3104
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Re: Hello from the Niagara River
« Reply #2 on: Jan 11th, 2008, 11:36am » |
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Sorry, forgot to let you know. If your doctor will contact your insurance co. and justify the need for it, they may allow for more Imitrex.
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Paul
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DennisM1045
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Re: Hello from the Niagara River
« Reply #3 on: Jan 11th, 2008, 11:49am » |
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Hi Mark,
Welcome! I'm glad you finally found us. 20 years fighting alone is a long time. No more! 
You need to do a bunch of reading between now and next Thursday. Don't expect this doc to be a CH expert. Very few are. There are two documents that describe current treatment strategy for cluster headaches.
http://www.plainboard.com/ch/chtherapy.pdf
http://www.efns.org/files/guideline_49.pdf
Also read through the information on the OUCH-US site. There is particularly good info on how to work with a physician to get the tools you need to fight.
http://www.ouch-us.org
Once you done some reading come back and we can help fine tune your strategy
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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Mark_Morris
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Re: Hello from the Niagara River
« Reply #4 on: Jan 11th, 2008, 12:01pm » |
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Thanks Rocketman3104.
If your doctor will contact your insurance co. and justify the need for it, they may allow for more Imitrex.
I called her last week about contacting the insurance company but she said that has never worked.
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Mark_Morris
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Re: Hello from the Niagara River
« Reply #5 on: Jan 11th, 2008, 12:02pm » |
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Thanks Dennis
I have printed those two documents out and will review them this weekend.
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Mark_Morris
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Re: Hello from the Niagara River
« Reply #6 on: Jan 14th, 2008, 9:07am » |
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Tried the partial injections of Imitrex (from the "imitrex tip" link) with limited success. Felt one coming during an early afternoon round of disc golf on Sunday and injected about 2mg from a 4mg vial and the headache deminished to a 2 or 3 Kip scale event. I can deal with that although it seemed like it lasted a while longer. Watched the football games yesterday from about 2:30pm until after 7pm and it was still there. My headaches usually last about three hours. I have one 2mg injection left with a double 6mg refill pack waiting for me at the pharmacy and three 100mg tablets left until I see my specialist on Fri morning. Thanks again for caring.
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| « Last Edit: Jan 15th, 2008, 1:51pm by Mark_Morris » |
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imfareware
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Re: Hello from the Niagara River
« Reply #7 on: Jan 14th, 2008, 9:34am » |
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Welcome aboard!! Where abouts do you live? I'm in East Amherst off Transit road.
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Pain is temporary, Love is Permanent
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Mark_Morris
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Re: Hello from the Niagara River
« Reply #8 on: Jan 14th, 2008, 11:49am » |
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I am on the west side near the Peace Bridge.
I like knowing you are close. Who is your Dc.?
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LeLimey
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Re: Hello from the Niagara River
« Reply #9 on: Jan 14th, 2008, 1:19pm » |
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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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Re: Hello from the Niagara River
« Reply #10 on: Jan 14th, 2008, 1:32pm » |
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Hey Mark,
I go to Louis Lazar Medical facility in Williamsville. Call VNA (Visiting Nurses Association) 630-8000. They are on Whirly Dr in Williamsville, they got my O2 in 1 day for me!!
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Mark_Morris
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Re: Hello from the Niagara River
« Reply #11 on: Jan 15th, 2008, 7:34am » |
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Hi Helen
I would love to meet up with all you guys. I will continue to monitor the boards for info.
Mike
Did you get refered there from your regular Dr.?
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imfareware
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Re: Hello from the Niagara River
« Reply #12 on: Jan 15th, 2008, 8:16am » |
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Mark
My regular Dr. gave me a script for O2, then call VNA and they will do the rest, took them 4 hours from the time I called to the time I had the O2 dropped off!
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Mark_Morris
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Re: Hello from the Niagara River
« Reply #13 on: Jan 15th, 2008, 9:11am » |
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Let me know how it works. Are you not seeing a specialist anymore? Are you on imitrex?
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imfareware
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Re: Hello from the Niagara River
« Reply #14 on: Jan 15th, 2008, 12:33pm » |
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I went to a specialist once at Dent, he didnt do anything but prolong the cycle with the steriods he wanted me to take.
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Mark_Morris
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Re: Hello from the Niagara River
« Reply #15 on: Jan 15th, 2008, 1:55pm » |
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Dent (Dr. Frost) just got back to me with my Imitrex request and I think they have no problem with it but I am waiting to hear again from the nurse to see if he actually okay'd it. Why do you think the steroids prolonged your episode?
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imfareware
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Re: Hello from the Niagara River
« Reply #16 on: Jan 15th, 2008, 4:27pm » |
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I took the steriod treatment for 1 week (twice with a week break inbetween). During the week I had zoner headaches, ones that were there, but wouldn't kick into gear if you know what I mean. I didn't have the full pain throttle, but there was the feeling that one was getting ready to set in. I was like that the whole week on the steriods, 2 days after the pills were finished, I had the worst headaches in my life, nothing in the 20 plus years of having these would compare to these.
I went back to see the neurologist at Dent, and he decided to give me 1 more week of the treatment. I was already 4 weeks into my cycle. The pain and frequency of the CH's should have been subsiding by now. So with 1 more week of steriods I figured that they would push the headaches off a week and my monthly bout with them would be done.
The same thing happened, for 1 week the same feeling, and as soon as the steriod pills were done, the CH's slammed me again. I had them for 3 more weeks, they brought me litteraly to my knees. My wife had to take me in to get O2 and by then the pain was set in.
I cant say for sure if it was the steroids because I'm not a doctor, but I do know that I will never take them again because of what I went through.
I hate to say that we each know what our own CH's feel like, but to me the steriod treatment felt like it just prolonged my bout for that year with them.
Give it a try if they push it, I didnt care for it.
Thats my opinion of them.
Has anyone else out in CH land ever had the steriod treatment?? You start with day 1, pop 6 pills, day 2, pop 5 pills, etc. until they are all gone.
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Charlie
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Re: Hello from the Niagara River
« Reply #17 on: Jan 15th, 2008, 11:26pm » |
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Welcome aboard Mark.
I'm way down in Jamestown but here is something that worked for me and the price is right:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Mark_Morris
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Re: Hello from the Niagara River
« Reply #18 on: Jan 16th, 2008, 7:04am » |
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Thanks Charlie
Now I'm not going to say that I can't wait to try it, But I will give it a try next time he visits.
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Mark_Morris
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Re: Hello from the Niagara River
« Reply #19 on: Jan 16th, 2008, 7:59am » |
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Mike
Reading your account gave me goosebumps. With only a few alterations, that is my story. I guess I am to receive the second steriod treatment on Friday. Like I said before, I had a monster the night of my initial infusion, then two imitrex aborted headaches on each of the next two days. From the last day I took 20mg oral prednisone, I only had one a day, then it alternated between one and two a day until this morning.
I also had, for the first time ever, what you call a zoner headache. I described it as a "headache that failed to organize". this happened twice (at least while I was awake). It could have occurred during sleep but would not have caused me to wake up.
I can't say that they got worse after the oral treatment stopped. Imitrex has been being used to dampen their effects.
I am also in about my fourth of fifth week of episode, but mine last about two months usually.
I am going to continue the treatment if so ordered. Dr. Frost is on the verge of giving me refillable perscriptions for 100 mg tablets and 6mg injectables wich is my goal for this episode. I will then stockpile.
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| « Last Edit: Jan 17th, 2008, 7:08am by Mark_Morris » |
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imfareware
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Re: Hello from the Niagara River
« Reply #20 on: Jan 16th, 2008, 7:19pm » |
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Hang in there Mark, if you need some more support drop me a line.
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