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Topic: Hello (Read 584 times) |
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wcork
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Hanging in There...
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Hello All,
I was a chronic CH suffer for 10 years from 94 to 04. Never going more then 2 days without one. Then I went into remission in 04 till just a couple weeks ago.
I am just so depressed right now because I thought I was done with them. They have come back even stronger then I remembered them. I have had about 12 hours of sleep in the last 5 days.
I have read through a lot of the post and information on this sight. It is encouraging and I am thrilled to have found a site like this. Back when I was suffering them during that 10 year span I thought I was alone most of the time. It is great to see so much more research on CH these days and the thought that doctors may start understanding them is hopeful...
my Family Physician is not up on CH and it is a little hard to get him to understand them. I did get him to give me a perscription for Oxygen yesterday.
I have a question on the oxygen but will post it in the treatment sections....
It is nice to know there are people out there who understand what I am going through... But on the other side I wouldn't wish this on my worst enemy and hate to know there are others out there that suffer...
Hope we all have a pain free day,
Wayne
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aloneuk
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Re: Hello
« Reply #1 on: Nov 14th, 2007, 6:16am » |
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Hey Wayne
welcome to the family  glad to meet you but sorry you have to be here,
May i ask what your taking ? Are you on any preventatives ?
I'm really sorry your back in the club i hope its a very very short cycle,
Your not alone anymore were all here for you, and we arnt going anywhere 
pf wishes
Ike
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the devil changes you !
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barry_sword
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Re: Hello
« Reply #2 on: Nov 14th, 2007, 6:43am » |
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Hi Wayne, you are with your own now. We all are in this together. Welcome.
You mentioned o2, read up on it to your left and print off a copy for your doctor. It has been a life saver for me and many others here.
Barry
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wcork
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Re: Hello
« Reply #3 on: Nov 14th, 2007, 6:50am » |
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Well unfortunately right now I am not on any preventatives... I am trying some of the natural urbs listed on this sight. My FP didn't want too prescribe anything.
I am set up with a neurologists at a headache clinic in 2 weeks the 26th... That is the soonest they could get me in but have me on a call list... I am not happy with my family physician right now.. I thought he understood better. But just mentioned migraine medicans... Said he would refer me to a neurologist... I still haven't hard anything on that referral... So i called the headache clinic myself and got me an appointment...
This session is running K8-K10's... The 10 year cycle that I went through I don't recall but having maybe 1 or 2 that level in a week. Most range from K5 - K7 during that 10 year cycle.
During that 10 year session they treated me for Migraine more then anything. Maybe I was just younger and could handle it better so pretty much gave up on doctors...
But after reading all the information provided on this and other sights I am more positive about treatment options now...
So I am just praying I can make it till I see the specialist....
Wayne
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barry_sword
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Re: Hello
« Reply #4 on: Nov 14th, 2007, 7:11am » |
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Wayne, you can hang in there. Ice also gives us some relief so you might want to try a frozen bag of peas or corn, I place it on the back of my neck on the cluster side and also on my cheek. Worth a try, it helps me quite a bit.
Barry
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Guiseppi
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Re: Hello
« Reply #5 on: Nov 14th, 2007, 11:01am » |
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Welcome to the board, keep bugging them on their cancellation lines, we need to get you on some decent prevents. Read the link on the left about oxygen. The key points are a non re breather mask, high flow, such that you breathe only pure oxygen, no outside air, and don't re breathe anything you've exhaled. I can abort in as little as six minutes. A side note, cut the strap off your re breather mask so if you fall asleep and your tank runs dry you don't suffocate!!
Then get on a preventative! I use lithium at 1200 mg a day when on cycle. Blocks up to 90% of my hits, been my silver bullet.
Welcome to the board, may your cycle be a short one!!
Guiseppi
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ski2k
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Re: Hello
« Reply #6 on: Nov 14th, 2007, 3:37pm » |
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Welcome aboard!
You've already been given some great info, and also seem to be reading up on things quite a bit. That's great!
I just wanted to give you some other things to try 'til you get in to see the neuro. Go out and buy a couple of energy drinks (like Red Bull or Monster) with the combination of Taurine and Caffeine in them. Chug one down at the onset of the headache, and it should help get rid of it right away.
You may also want to try Melatonin for the night time hits. Take (about) 6mg about 1/2 hour before bed, and that helps a lot of us reduce or avoid the night time hits.
Best of luck, and keep us posted!
Adam
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wcork
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Re: Hello
« Reply #7 on: Nov 14th, 2007, 4:58pm » |
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Thank you for the support and information.
I read up on the oxygen and that was some great information. I have ordered a rebreather mask and will hopfully have it in a day or two. I am also going to try the drinks. I am sure part of my problem is my family physician would only give me a perscripton for 7lpm. The regulator I have goes up to 8 so have it on that. I am trying to get him to up it to the 15.
I started taking the Melatonin Monday night after reading about it on this sight. I got six hours of sleep Monday night and sad to say I thought that was so wonderful... It was the most I had in 4 days.
But last night I took it as well and woke up with 4 of them and after the 4th just stayed up.
I have had 13 hits so far since 9pm last night. Yesterday I started the Kudzu as well...
It is times like Monday morning that kill me in more ways then one. I woke up about 5 in the morning with a K10. It was storming outside and I couldn't go outside to walk. I had to wake my wife up to help keep the animals out of my way and light some candles so i could pace in the house. I was in really bad shape then look over and see my wife crying... I just couldn't handle that, it was almost a breaking point for me... I just wanted to run out of the house into the storm. It is bad enough that I am suffering but our family suffers so much too. When they have to watch us and cant do anything about it... I don't know which is worse in my mind... The pain that I am in or the pain in my heart knowing that my wife is suffering to. I have to admit though if it wasn't for my wife I don't know where I would be. She is so supportive and knows exaclty what too do and not do when I have one...
Thank you everyone... This site and your comments have ment a lot to me... I hope to be a regular around here and help support others as well...
Wayne
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DennisM1045
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Re: Hello
« Reply #8 on: Nov 16th, 2007, 7:21am » |
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Hi Wayne,
I hear you. Watching our families cry while we pace just adds guilt to the fear and pain. We'd be lost without them but at the same time do anything to spare them.
How many milligrams of Melatonin are you taking right now? I know it can take a week or two to become effective. Everyone is different.
Getting a referal to a Neurologist is a good idea. Bring along the info from Dr Rozen's article on CH treatment. That'll get you a better regulator. Even if he perscribes 12lpm, you'll get a regulator that'll go to 15lpm. Hopefully that'll do the trick.
http://www.plainboard.com/ch/chtherapy.pdf
Have you tried energy drinks yet? I combine them with O2 therapy with great results. Though I tend to rely on Imitrex for the bad ones late at night because the energy drinks will keep me up.
Keep fighting Wayne. We'll be here to help where we can.
-Dennis-
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| « Last Edit: Nov 16th, 2007, 7:22am by DennisM1045 » |
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wcork
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Re: Hello
« Reply #9 on: Nov 17th, 2007, 6:26am » |
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Well been a couple days since I been able to get onto the sight.
Been to Doctor...
Lithium - working up to 1200mg a day.
Imitrex - 2 shots a month..
O2 - up to 15lpm...
Melatonin - 9mg a day.
Drinking a RedBull on occasion..
Still running a hit every hour or two. Still at most 4 hours a sleep a day...
O2 knocks them out but they are back within the hour. Have tried downing a RB at the begginning befor I go on the O2. But no change in final outcome.
I have tried suffering through a few of them to see if that would help as well. Use to be when I would just suffer through it instead of doing the O2 it could be up to 12 hours before I got another hit. But even suffering through them right now is not stopping the hits.
My head is so sore right now that I cant touch it.
I am really starting to get depressed. I need some releif. I am going to ask my doctor I just saw last week to refer me to a headache clinic in Springfield, MO. The nero I saw was more interested in sleep depervation treatment then the CH. I think she knows about CH but doesn't understand them. I am wondering if Doctors just shrug when you tell them CH. Instead of maybe showing a little compasion they seem to shrug and say "it sucks to be you"...
Since I am a Manager of R&D group and do computer programming. I am able to work from home which helps me stay on the O2. But I am going to have to go into work some next week. Hopefully my boss will keep understanding through this cycle and allow me to work from home as needed. But with only getting a maximum of 4 hours a sleep a night and that is not even together but an hour at a time. I just don't see myself being productive at work..
I am going to be doing what I can to get my insurance too cover more of the Imetrex if they work. Don't know how easy that is going to be but will see what happens. Reading about the predisone I am wondering about that now. I have had that seveal times before because of my neck. I had neck surgery a little over a year ago...
I will keep chugging along and looking for that day my head meets my pillow for a few hours straight... 
Wayne
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black
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wayne i hope u get some relief soon.hang on there my friend.give some time to the meds to act.i wish u to have a good night sleep soon.
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DennisM1045
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Re: Hello
« Reply #11 on: Nov 17th, 2007, 6:35pm » |
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Hi Wayne,
Sorry I didn't see this earlier and that none of our tricks seems to be helping. I think the pred is a good idea. Hopefully the Lithium will have taken effect by the time the taper is done. Talk to your Dr about this ASAP. Don't wait for the referal. That can take time and time == pain.
I bring O2 to work and give anyone you work close enough with a copy of the coworker letter here:
http://www.ouch-us.org/chgeneral/colleagueletter.htm
That should help them understand or at least accept what you are going through. Get your O2 supplier to get you some e-tanks and bring them into the office with you. I keep one in an empty file cabinet. I get hit, disapear for 25 minutes and then I'm back at my desk. In my last job I too lead a group of developers so I know it can be done. That doesn't make it easy. Right now I'm back to being joe engineer again.
Just show them your value when your cycle is over. It's important that they know it will end and you'll be back to normal (what ever that is ). If your a typical clusterhead I'm sure they already know.
Suffering through or taking the meds doesn't matter to the beast. It's gonna do what it's gonna do. The SOB morphs all the time. Try not to get caught up in the cause and effect over annalysis trap. You'll drive yourself nuts. If you have weapons, use them. Going commando doesn't help.
I wish I had more. I'm sending you all the PF vibes I can muster. You will get through this. CH won't kill you. Though sometimes I know it feels like it will.
-Dennis-
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DennisM1045
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Re: Hello
« Reply #12 on: Nov 17th, 2007, 6:47pm » |
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Something else I just though of. In Dr Rozen's article on plainboard he discusses the effectivness of Olanzapine. It works in 20 minutes and knocks you out to boot. That might be the ticket to some sleep. Though I saw my daughter on this for a time and it really does kick your butt. But taken early enough in the evening, the effects should wear off by morning followed by some strong coffee. Like I said, just a thought. Run it by your Dr and see what they think.
-Dennis-
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wcork
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Re: Hello
« Reply #13 on: Nov 18th, 2007, 6:31am » |
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Dennis --
Thanks for the information and support.
I have sent that letter on to a few people at work including the ones who work for me and my boss. I get the impression my boss understands but he is good at putting on faces.
My last cycle lasted 10 years and then a 4 year break. I sure hope this one doesn't last 10 years or if it does that I am able to control it better then I am right now.
I think I am seeing some benifit fromt he lithium. The attacks do not seem to be as sever. Instead of hitting K8+ all the time I seem to be getting a lot of 6/7's right now. Thos are border line livalbe. I think it just depends on what I am doing at the time.
My biggest problem right now is I need sleep/rest. I am just so tired and drained. I plan on talking to my doctor tomorrow and maybe get some additional relief. I learned to live with the beast before and will again. Just have to get that sleep...
Thanks Everyone and hope you all have a PF day!!!
Wayne
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