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Topic: I'm New! (Read 490 times) |
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Lejla
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Hello everyone,
I've had chronic headaches for about 10 years and never really knew what type they were or that there were different types. I'm really confused and actually pretty mad at my doctors. Every doctor I saw gave me pain killers and told me to call him if it doesn't help. Every time I called back screaming that it doesn't help, they gave me something stronger. Finally, two years ago, one of them diagnosed me with chronic cluster headaches. He says I also have tension headaches and migraines. Again, he gave me "Ultram" and said there's nothing he could do. I'm sorry to say that it took me two years to finally get on the internet and do the research on my own. I mainly wanted to see if there are other options because even the pain killers don't work. None of the doctors ever mentioned o2 as an option or a lot of the things I read about on the message board. I pretty much was told that pain killers for the rest of my life are my only option.
Needles to say I feel like a newborn. Sounds like there are plenty of options I didn't know about. But, thanks to you guys and the good information on this website I'm going to talk to my neurologist and see if he can prescribe o2 for me so I can try it. My appointment is in 2 weeks and I can't wait to hear what he says.
I'm just really glad that I found someone that understands the pain and knows what I'm going through. I do have great support from my family and friends, but they've never experienced this and really don't know what the hell is going on with me.
Thanks for the great information! 
Lejla
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Erika
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Re: I'm New!
« Reply #1 on: May 3rd, 2007, 1:28pm » |
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I am brand new too
I am not a sufferer - I found this site for my hubby and haven't left this seat in three days - there is just so much information on here that I can't seem to pull myself away from. (I hope I still have a job - heck it was only a job - my hubby is FOREVER!)
The people here are amasing - so open and loving I find myself in tears over and over each day. As one person so perfectly put it for me - It feels like I have found people from my home planet! We thought we were alone.
You are not alone!
Even as a brand new person - a couple of days here - I welcome you aboard! But hold on to your seat cause it is a heck of a ride!
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Guiseppi
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Re: I'm New!
« Reply #2 on: May 3rd, 2007, 1:46pm » |
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Unfortunately your story is not unique. It takes many years for many of us to get anything close to a correct diagnosis. A couple of things...You need to talk to your doctor about prevntatives and abortives. I'm episodic, meaning I go 2-3 months where I get headaches followed by a break of from 3 months to a couple of years. When I'm on cycle I use lithium, at 1200 mg a day as my prevent. It reduces both the number and the severity of my headaches.
For the headaches that break thru I use oxygen and oral cafergot, with the occasional imitrex injectable when I'm really getting hammered. That's my regimen, you'll see a hundred variations, most all will include the oxygen!!!! The best abortive, in my humble opinion, with the least amount of side effects and relatively cheap.
Welcome to the board, it is incredible to meet and talk to people that really know what you're going through!!!
Guiseppi
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Lejla
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Re: I'm New!
« Reply #3 on: May 3rd, 2007, 1:54pm » |
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 See...all that "stuff" you mentioned that you use makes no sense to me whatsoever. I guess I do know what Lithium is and the thought kind of scares me, but the rest was never mentioned to me and I'm not familiar with how any of it works. That's why I'm glad I found you guys. I have a lot of research to do and a lot to discuss with my neurologist. Hopefully, I'll find my own cocktail that works for me soon.
Thanks again,
Lejla
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Lejla
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Re: I'm New!
« Reply #4 on: May 3rd, 2007, 2:05pm » |
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[u]I am not a sufferer - I found this site for my hubby and haven't left this seat in three days - there is just so much information on here that I can't seem to pull myself away from. (I hope I still have a job - heck it was only a job - my hubby is FOREVER!) [/u]
That's so funny! That's my issue right now as well. My boss is about ready to kill me. I'm a travel agent and business is slowing down at this time, but there's still a lot of work to do and I've been on this board for two days pretty much. There's just so much to find out about. Thanks for the welcome Erika. I'm sure your husband appreciates the support and the fact you want to know more about his "condition"! 
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Guiseppi
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Re: I'm New!
« Reply #5 on: May 3rd, 2007, 2:24pm » |
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The first time my doctor mentioned lithiun I said no way, everyone will think I'm crazy!!! Now I kick myself for not getting on it sooner.
It take about 2 weeks to build up in my system so when my cycle starts I go on a reducing prednisone taper for two weeks while I ramp up on the lithium. My eventual dose is 1200 mg a day but you build up to that. It blocks about 80-90% of my headaches depending on how strict I am about avoiding triggers, for me alcohol, sleep deprivation, extended periods of stress or staying hungry for long periods of time!
If you do try lithium just don't tell any of your friends...they start talking really softly around you. I stalk the board while I'm at work too......can't stay away!!!
Guiseppi
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Bert
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Re: I'm New!
« Reply #6 on: May 3rd, 2007, 3:14pm » |
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I sincerely hope that your neurologist will prescribe oxygen. if not: put him against the wall and pull the trigger! Oxygen has done so well for many sufferers.
I wish you all the best and keep us informed.
Best regards from Holland where the sun shines brightly,
Bert
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You're in for surprise, you're in for a shock. When you least expect me and you turn your back, I'll attack. ( by Judas Priest )
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Rosybabe
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Re: I'm New!
« Reply #7 on: May 3rd, 2007, 5:30pm » |
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Hi Lejla!
Welcome aboard!!! 
Sorry to hear you have been disgnosed with this terrible condition but I just can't understand that if the Dr knew about CH how in the world he only gave you painkillers? that is beyond my mind!!
anyway, please talk to you Dr in your next appointment and be sure you do not get out of there without the prescription for Oxygen!!
and some kind of triptan, You must find relief soon..
keep reading, there is a lot to learn about CH and you are in a great place...do not forget to check out O.U.C.H., there is alot of great information there that you can also print out and show your DR.
you are not alone on this, here you will find advise and a shoulder to cry
this place never closes 
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BB
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Re: I'm New!
« Reply #8 on: May 3rd, 2007, 9:47pm » |
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Hello Lejla
You need to ask your doctor to refer you to a neurologist, preferably one who is experienced with treating headaches to get a proper diagnosis.
Have you had the general work up like a MRI and blood tests ?
Its very important to get a proper diagnosis before taking medication. Taking the wrong medication for the wrong condition can be very dangerous.
Take care and painfree wishes to you.
Annette
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ClusterChuck
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Re: I'm New!
« Reply #9 on: May 3rd, 2007, 10:18pm » |
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Welcome aboard, Lejla!
Check your PM's ...
Chuck
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Thomas Fuller
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Lejla
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Re: I'm New!
« Reply #10 on: May 4th, 2007, 11:07am » |
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Have you had the general work up like a MRI and blood tests ?
Yes, long time ago! Now I asked them to redo everything and I have an appointment on Monday afternoon for an MRI. In two weeks I'll see my first neurologist. That's why I'm so mad at my doctors. Most of them told me that it's my lifestyle. I smoke, drink on the weekends and live on coffee. Bastards!
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Guiseppi
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Re: I'm New!
« Reply #11 on: May 4th, 2007, 11:23am » |
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That's why I'm so mad at my doctors. Most of them told me that it's my lifestyle. I smoke, drink on the weekends and live on coffee. Bastards!
Every doctors appointment I've ever had ends with...lose 10 pounds and give up the blended whisky's. If you follow their advice you won't necessarily live any longer....it'll just seem that way!!!
Guiseppi
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Charlie
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Re: I'm New!
« Reply #12 on: May 4th, 2007, 10:20pm » |
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Welcome to the madhouse Lejla.
Here is a technique that kept me from going postal some years ago:
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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
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.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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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Callico
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Re: I'm New!
« Reply #13 on: May 6th, 2007, 12:57am » |
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Glad you finally found us. As you have seen there is a lot of great info available to you. please print out any info you think is pertinant to take to the Dr with you when you see him. That way you won't forget it, and if he doesn't have a God complex he will be willing to look it over and work WITH you to develope a treatment regimen that will help.
Lithium worked well for me for a while in conjunction with Verapamil, but I developed some side effects about a year later and had to stop. I've been using Kudzu for the last couple of months with excellent success. I also use Red Bull, or its equivalent, as an abortive and have had pretty good success with it.
You will want to keep an eye on the board toward the end of the year as we get ready for Davcon in Jan. It is a meet and greet in Davenport that has been held for the last four years. It is an awesome opportunity to meet other clusterheads in person. To have the opportunity to be with another person who UNDERSTANDS what you are dealing with is amazing.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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Lejla
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Re: I'm New!
« Reply #14 on: May 7th, 2007, 12:01pm » |
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Thank you all for the great suggestions and welcoming me. My appointment for an MRI and some other tests is today and then a week from today I see my neurologist. I've printed out a lot of information I found on this website and will be taking it with me. I'll let you all know how it goes. If he doesn't work with me and lets me try o2 and some of these other meds I've read about, I'll just turn into my other self that doesn't take no for an answer and make him do it anyway...hihihi...
Again, thank you!
Lejla
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Guiseppi
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Re: I'm New!
« Reply #15 on: May 7th, 2007, 12:04pm » |
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Atta girl, Cluster Chucks number one lesson, attitude is everything!!!
Guiseppi
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Guiseppi
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Re: I'm New!
« Reply #16 on: May 8th, 2007, 12:15am » |
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Please repost this in the new members area. I'm getting alarm bells from your post but I'm not sure why. I'm going to assume you are a legit sufferer looking for help....but I am unsure.
I'm assuming you have been to a neuro and have a good diagnosis. Take the cluster quiz on the left and see how you score. Then get oxygen prescribed. Print out the info on the left on oxygen and take it to your doctor. It must be started at the first hint of a headache, at a high flow rate, up to 15 lpm, with a non re breather mask as it's essential you breathe pure oxygen.
The verapamil works for many, but it does take a fairly high dose for many and you do have to monitor your blood pressure.
Try to get imitrex injectables prescribed, in a pinch they work really well.
If you're for real please stick around and ask questions. If you're just a troll please move along, there are some very frightened people here, in a lot of pain, looking for help. I hope you are truly a CH sufferer and I hope we can help you.
Guiseppi
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orovillemike
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Re: I'm New!
« Reply #17 on: May 8th, 2007, 6:40pm » |
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i understand you being the stand offish .
i havent seen a nurolagist and my dr. says he needs to check my blood ox levels befor he can give me o2
i was on imatrix pills and when i took them i would have chest pain and pain in my corrid artery in my neck so they took me off of it
any one else have this reaction to imatrix ?
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grant me the serenity to acept the things i can not change , the curage to change the things i can and the wisdom to know the diffrance and the power to carry that out
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JohnC
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Re: I'm New!
« Reply #18 on: May 8th, 2007, 7:55pm » |
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Welcome Lejla
I am new to this site also and there are some great people here,as far as meds and all nothing works for me so I will not give info, I am finding new things out daily and I thought I heard it all,and to the guy that had the reaction to imitrex pills I had a real bad reaction to imitrex injectiions so I use the nasal spray sometimes it helps if I get it in time
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JohnC
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Re: I'm New!
« Reply #19 on: May 8th, 2007, 7:58pm » |
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Alcohol is a trigger for ch I have'nt drank since being diagnosed 6 years ago sometimes the smell of alcohol will trigger an attack for me.It sucks
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Guiseppi
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Re: I'm New!
« Reply #20 on: May 8th, 2007, 9:46pm » |
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Imitrex is a vaso constrictor so if you have any kind of heart related activity like that, be very concerned! The pills don't work for a lot of people because these things ramp up too fast, the pills just don't get into your system fast enough. I've had good luck with the imitrex injectables, but I tolerate it pretty well.
That's the beauty of the oxygen, it's fast acting. Print out the info on the left for oxygen and really be persistent in demanding it. If the doc won't come thru with it, consider using welders oxygen. It all comes out of the same tanks, just requires a different delivery system. If you have to go that route, start a new thread and ask for help. I don't know how to do it but there are plenty who do.
I re read my post to you and I'm sorry, it was late and I posted much more harshly then I intended! We've had internet troll problems lately on this site. Please start a new thread with your info, when an existing thread has this many responses a lot of people won't check them and you're missing out on a lot of other people who may be able to help you! Sounds like you're in our boat, we'd love to help you out!
Guiseppi
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Lejla
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Re: I'm New!
« Reply #21 on: May 9th, 2007, 11:57am » |
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on May 8th, 2007, 7:58pm, JohnC wrote:| Alcohol is a trigger for ch I have'nt drank since being diagnosed 6 years ago sometimes the smell of alcohol will trigger an attack for me.It sucks |
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I drink Vodka Red Bull and it hasn't triggered a headache for me yet, which is pretty weird. I guess it's the right combination for me because like you said, the smell of wine or whiskey will do it sometimes.
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Lejla
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Re: I'm New!
« Reply #22 on: May 9th, 2007, 12:00pm » |
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on May 8th, 2007, 6:40pm, orovillemike wrote:i understand you being the stand offish .
i havent seen a nurolagist and my dr. says he needs to check my blood ox levels befor he can give me o2
i was on imatrix pills and when i took them i would have chest pain and pain in my corrid artery in my neck so they took me off of it
any one else have this reaction to imatrix ?
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Welcome,
This is a great place for you to find out information and ask questions. I can't help you much with Imitrex since I've never tried it, but there are plenty of people here who have and will answer your questions.
Lejla
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