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Topic: Desperate need of a brake! (Read 271 times) |
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Mattrf
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Desperate need of a brake!
« on: Mar 28th, 2006, 10:27am » |
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The longest I have been symptom free in 3.5 months is 30 minutes, it is really starting to get to me now. I have scary dreams of suicide almost every night, I would not do such a thing but the dreams are very disturbing and have me feeling totally jacked up in the mornings. I know I am not alone and many of you are far worse off then I am, I probably have at least a couple more months to go before it goes into hiding again since the last time it lasted around 9 months. It’s not the level of pain but the constant pain that is getting to me, I would say most of the time I am bouncing between a 2 – 3 on kip’s scale so not that bad and manageable but the fact that it is just relentlace and just will not let me alone is the hardest part and looking forward to another possible 6 months of this is just hard to even think about dealing with.
I just needed to vent a bit, glad you guys are here.
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There is no stronger a person then one who can deal with brain pain and still function.
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Cathi04
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Re: Desperate need of a brake!
« Reply #1 on: Mar 28th, 2006, 11:13am » |
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Matt, that DOES suck, and you're right, there are plenty more here who are dealing with the same garbage.....but, there's a difference............you are here..where you can vent all you want, and people understand. It makes all the difference in the world.
Tell us, please, what you are using to abort?? To prevent?? have you tried 02?
Nobody hates this beast more than Clusterville. Nobody will understand your pain better.
Welcome to Clusterville, Matt, glad you found it, and sorry you need it!
Keep posting, please!
Cathi
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Life is not measured by the number of breaths we take but by the moments that take our breath away.
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Mattrf
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Re: Desperate need of a brake!
« Reply #2 on: Mar 28th, 2006, 11:23am » |
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My neurologist is ignoring me at this point, he tried a bunch of stuff last time and none of it worked. I have tried to get him to email me a list so I can compare it to the drugs everyone here use but have not been successful so far. I go see him next week and I am going to push the issue with him and get the info plus I made an appointment with a headache specialist that was on a list of recommended doctors someone posted but that is not until late next month. Guess I have to just keep toughing it out for now. Thank god I have this place to vent and talk to people who truly understand what I am going through, can’t tell you how much this site has meant to me and my wife.
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alchemy
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Re: Desperate need of a brake!
« Reply #3 on: Mar 28th, 2006, 11:23am » |
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vent away my friend, you're in the right place. all i can say is hang in the best you can. keep us up tp date on how you're doing jim
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sandie99
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Re: Desperate need of a brake!
« Reply #4 on: Mar 28th, 2006, 11:23am » |
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Matt,
lots of PF vibes are coming to your way from Finland!
I recall very well how low I felt when I was a chronic. The constant pain is the worst.  I hope that the beast will give you a break very soon.
Best wishes & PFdays,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Mattrf
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Re: Desperate need of a brake!
« Reply #5 on: Mar 28th, 2006, 1:33pm » |
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My doctor just called and it seems he was on vacation and that is why I had had no replies from him, nice of them to tell me. Oh well, he has decided to have me try Verapamil and O2 he also giving me nasal spray but I forget what it was called. Sure hope this gives me some relief, now I need to read up on the O2 so I use it right. 
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There is no stronger a person then one who can deal with brain pain and still function.
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LeLimey
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Re: Desperate need of a brake!
« Reply #6 on: Mar 28th, 2006, 2:17pm » |
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If you are going to try the verap then you might like to consider a prednisolone taper. Verap will take up to two weeks to kick in and the pred will give you PF time while you wait. You need to have regular ECG's while on verap and also at every dosage increase. People here are on horse sized doses of verap but it works for alot of people. There are always options, you're best weapon at the moment is you reading this site, getting the info on EVERYTHING and making your mind up for yourself! O2 definitely, definitely, definitely, its quite simply the best weapon I have and I can't praise it enough.
Keep venting anytime, let's get you sorted out okay?!
helen
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Mattrf
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Re: Desperate need of a brake!
« Reply #7 on: Mar 28th, 2006, 2:33pm » |
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Can’t wait to get the O2, been at a 5 all day with no brake, sure hope the O2 helps.
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LeLimey
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Re: Desperate need of a brake!
« Reply #8 on: Mar 28th, 2006, 2:48pm » |
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Make sure you have a non rebreather mask Matt.. what flow rate does your tank go up to?
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Mattrf
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Re: Desperate need of a brake!
« Reply #9 on: Mar 28th, 2006, 2:56pm » |
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Not sure, I am going to pick up the tank after work today.
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LeLimey
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Re: Desperate need of a brake!
« Reply #10 on: Mar 28th, 2006, 3:12pm » |
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You NEED one that goes to 15 litres per minute, make sure they give you the right one!
good luck!
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Mattrf
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Re: Desperate need of a brake!
« Reply #11 on: Mar 28th, 2006, 3:15pm » |
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Will do, thanks.
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Luke63
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Re: Desperate need of a brake!
« Reply #12 on: Mar 28th, 2006, 5:13pm » |
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Took me 25 years to discover O2....hope that helps did for me..and I was a total pessimist (is that how you spell it?) when I heard about it. Luke
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Mattrf
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Re: Desperate need of a brake!
« Reply #13 on: Mar 28th, 2006, 5:24pm » |
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Just found out the doc is not in the office until Thursday so I have to wait a couple days before I can get my O2, crap, I really wanted it now I am at a 5.5 and climbing.
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Charlie
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Re: Desperate need of a brake!
« Reply #14 on: Mar 28th, 2006, 11:02pm » |
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Shit. That sucks bigtime.
Doctors usually say that they have no time to fool around emailing patients. They really don't get it. Only a clusterhead knows.
All I can do is to encourage trying my technique. It does work and it ain't just me. I did get some wonderful email from two women in Oklahoma that found it long ago in the guestbook. I posted them on the board long ago and they exist somewhere in the archives here.
Keep after him and keep up the ranting.
Charlie
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juvy
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Re: Desperate need of a brake!
« Reply #15 on: Mar 29th, 2006, 6:56am » |
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hey Matt, hang in there. lots of vibes you're way.
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Charlie
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Re: Desperate need of a brake!
« Reply #16 on: Mar 29th, 2006, 6:40pm » |
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I've been reminded to post the technique that I describe here. Here ya go and keep at it. It costs nothing and can work. Hard to beat:
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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thebbz
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Re: Desperate need of a brake!
« Reply #17 on: Mar 29th, 2006, 8:30pm » |
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Matt,
welding 02 works as well..just need to rig a mask and regulator...a regulator for C02 will work in a pinch and suck the 02 right out of the hose in the mouth.
The prednisone will have you PF in a day or two should you choose to accept it. lol  I am presently starting the fourth month,,,you are not alone.
jb
Got coffee?
all the best
jb
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BlueMeanie
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Re: Desperate need of a brake!
« Reply #18 on: Mar 29th, 2006, 9:18pm » |
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Welcome to Clusterville Matt.
Don't worry too much about how long it's gonna last. It'll end when it ends. Just try to take it a day at a time. Before you know, you'll be PF and doing the happy dance.
02 doesn't work real well for me, but I can tell you that you gotta hit the 02 as soon as you feel a CH coming on. Don't delay if at all possible.
I hope the spray does the trick as I bet it will. You haven't said what it is, but if it's Zomig or Imitrex, you should be good to go.
Good luck to ya Matt. PF vibes heading your way.
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Mattrf
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Re: Desperate need of a brake!
« Reply #19 on: Mar 30th, 2006, 12:09pm » |
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The spray was Migrinal and I tried it this morning as soon as I felt the headache coming and so far no good so I guess chalk another up to the no help list.
Should get my O2 today so we will see and hope that it helps.
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Dragnlance
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Re: Desperate need of a brake!
« Reply #20 on: Mar 30th, 2006, 12:29pm » |
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Hey man,
I understand the dreams. I also have been having some very disturbing dreams. Not sure I like visits from night horses.
I hope you are pf soon!
Dragn
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Richr8
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Re: Desperate need of a brake!
« Reply #21 on: Mar 30th, 2006, 1:00pm » |
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on Mar 28th, 2006, 2:17pm, LeLimey wrote:If you are going to try the verap then you might like to consider a prednisolone taper. Verap will take up to two weeks to kick in and the pred will give you PF time while you wait. You need to have regular ECG's while on verap and also at every dosage increase. People here are on horse sized doses of verap but it works for alot of people. There are always options, you're best weapon at the moment is you reading this site, getting the info on EVERYTHING and making your mind up for yourself! O2 definitely, definitely, definitely, its quite simply the best weapon I have and I can't praise it enough.
Keep venting anytime, let's get you sorted out okay?!
helen |
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My regimen precisely. Works as advertised, along with O2 for the shadows that sneak by. I've been pf, except for some mild shadowing, for a while although I know I am still in cycle because of break through shadows. So far, Oxygen has knocked them all down within 15 minutes.
pf wishs,
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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