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Reno
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Hello to all:
I have read many of the messages regarding the suffering we go through as well as all the attempts at bringing the much needed relief to the indescribable pain. I would like to add my 2 cents worth !!
I am a 59 year old male and have been suffering from CH for over 30 years now. I have had the same neuro the entire period, so he knows me verrrrrrrrry well ! I was one of his early patients and CH was one of his "projects" in Med School.
Every October, the CHs return, just around the time we make the change from Daylight Savings Time to Standard Time. I have been on just about every medicine you have all talked about (except Topamax and Neuronton).
At first, Lithium worked, then it stopped working. Tried Sansert, but side effects were debilitating. The best solution for prevention has been big dose of prednisone along with verapamil. By starting on verapamil several weeks before I knew the CH would begin, I was able to keep them "at bay" for several years. If they blossomed, the prednisone would knock it out.
Then, after about a 20 year period, the CH vanished. I went for a period of 6 years with no CH. I thought I was "home free" and could look forward to living life in a normal fashion.
Ah...not so lucky....I think these CHs know when we are happy and just comeback to make life miserable for us.
During the six year interim, I had a heart attack and was placed on Cardizem (also a calcium channelblocker like verapamil). But, the Cardizem does not work in the same fashion as Verapamil and I cannot mix the two of them.
Now, once again, the CH is back with a vengence.....worst they have ever been. I have tried the prednisone and no help so far. Each headache reaches 10kips in a few minutes and lasts for several hours. I have an O2 tank and take in 8 liter/min ....use the hot compresses, and take Midrin. (Midrin is the only analgesic that takes away the pain). I have tried several narcotics, and none work.
Tried all the ergos early on and none of them worked either. And...I drink H2O by the gallon !!
My daughter also has CH and Imitrex works for her, but...because of my heart condition, I cannot take it.
My neuro has just recommended Topamax, but I have been reluctant after reading the side effects, and really hoping that this last dose of prednisone will work. I have about four hours of peace before the next bout.
Anyone out there have any advice ??
Reno
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Reno
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jonny
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Welcome Reno dude,
Have a seat and put up your feet, get to know the players and join in on the conversations.
Then get yourself an 02 regulator that goes to 15 LPM's.
......................jonny
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Ueli
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Welcome Reno,
As jonny said, it is important to do the oxygen the right way. To fill your lungs with 100% O2, and nothing but O2, a high enough flow rate and a non-rebreather mask with a reservoir bag are important. This can make the difference between failure and success.
I don't know much about aftercare for heart attacks, but I think it would be worthwhile to discuss with your doc if it is possible to up the Cardizem above the dose needed for heart care or if it is possible to change to Verapamil (also at a higher dose than needed for the heart).
PFNADs
Ueli
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2late
New Board Hall of Famer
Ride Free..Pain Free
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Re: New to site
« Reply #3 on: Nov 6th, 2002, 6:56pm » |
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welcome to the board Reno, that sucks to suffer that long, 02 has been a lifesaver for me, look into it! good luck ! sorry to hear your daughter has to deal with this, i wonder about my kids sometimes. if, godforebid any of them suffer i'll have all the knowledge & support they'll need because of this site! ..........2late
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Charlie
CH.com Alumnus
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Happy to be here
    
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Re: New to site
« Reply #4 on: Nov 6th, 2002, 9:22pm » |
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Welcome to our little world.
Just to let you know, there are others here your age with this horror. Mine have been gone 11 years. I got them when I was 23 and they disappeared when I was 45. I can't speak to drugs as I had only the beta-blocker, Inderal. Damn sorry the beast decided to revisit.
Keep in touch.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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Azrael
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Sometimes... Being good just ain't worth it.
 
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Re: New to site
« Reply #5 on: Nov 7th, 2002, 2:52pm » |
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Welcome to the board! Sorry that the beast is grinding your cranium, then cooking it over an open flame, covering it with hydrochloric acid, and chomping into it with his jagged teeth. Good luck!
PFDAN................................. Drk^Angel
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Margi
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Re: New to site
« Reply #6 on: Nov 7th, 2002, 3:06pm » |
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Hi Reno, and welcome.
Sorry to hear you're getting hit again. You've gotten some really good information here about flow rate for oxygen - it's so important to do it right.
I'd sure try adjusting the oxygen before trying the topomax - just to rule out the possibility that the O2 still isn't working. Topomax has helped some of our folks here (BarbD comes to mind as a success story, and I believe TerryS is doing a trial of it now), but it does carry some pretty nasty side effects, the biggest we've heard of being lack of mental clarity. (But, with this group, sometimes it's hard to notice. LOL)
Let us know what you decide to do, Reno.
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kathy copelin, ch.com 8/8/06
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echo
CH.com Alumnus
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Chronic and still alive --- I Win!
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Re: New to site
« Reply #7 on: Nov 7th, 2002, 3:13pm » |
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Hello Reno, welcome to the MB. Sorry to read that the SOB has returned with a vengence. Hate reading when drugs that used to work quit. The demon is a mutant, just when you think you have him figured out he changes the steps to the dance.
Good luck, keep in touch
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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Jabeen
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What doesn't kill you, makes you stronger.
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Re: New to site
« Reply #8 on: Nov 7th, 2002, 3:13pm » |
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Welcome-sorry for you and sorry for your daughter. I also pray neither of my children ever have to deal with this monster! Mine didn't hit until I was 45, so I may not be around by then for them??? I hope there is still an active website. 
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OUCH member since 9/5/02
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Reno
New Board Newbie
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Re: New to site
« Reply #9 on: Nov 8th, 2002, 4:49pm » |
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Thanks to all for the info on O2. I will get a new regulator and see if it helps to drown in O2.
I decided not to take the Topamax after reading al the horror stories.....I think I'd rather deal with the demon.
I visit my Cardiologist next Tuesday tosee if he will allow me to go back to Verapamil. I'll keep you all posted following that visit.
This is a great site and with all of us suffering, you would think that there would be some magical cure for this beast by now. Looks like our Neuros are all on same page and all suggest same things.
I wish I could go back to school and spend time doing research on this...there must be an answer somewhere.
Bye...time to jump back on the O2.
Reno
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Reno
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Cerberus
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Whomever said that two heads are better than one?
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Re: New to site
« Reply #10 on: Nov 8th, 2002, 8:48pm » |
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Well, Reno....
I'm pretty new to all this stuff myself and with the exception of two years of nurses aide experience I gotta agree with the O2 theory. Nothing to my knowledge reacts badly with o2 but fire to the best of my knowledge.
Welcome and good luck buddy
Capt. Brown
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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rumplestiltskin
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shall we not cloud the O2 info with the not so important numbers. The bottom line actually is not 6 or 8 or 10 or even "the king of O2's" magic 15LPM. The fact is that you must attain a flowrate high enough so that you never have to wait for the bag to fill. So that no matter how deep and fast you breath...the bag can keep up.
Those new to O2 may not get this simple fact since the numbers are sometimes presented as gospel. Personally...when my lil orifice is clean (yup they sure can get stopped up)...I usually can't suck any more than 8 LPM.
Jonny has always sucked more than I.
Good Grief
den
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Lori
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Re: New to site
« Reply #12 on: Nov 9th, 2002, 12:11am » |
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Welcome Reno..sorry to hear you are getting hit so bad right now. I hope the change in o2 works for you. I did use topomax for the first time in Feb. and yes the side effects are not fun. I must say a couple things though just for the sake of those who have tried everything and may need a last resort. The side effects (mental effects) lessened after two weeks of being on it for me. When my dose was increased to 100mg I got depressed and cried ALOT but after about a week that also lessened. The topomax along with verapamil saved me this last cycle. It seemed the verapamil helped some but when topomax was added and my dose increased to 100mg..I was basically pain free. Some shadows, but no big deal. I can't say topomax will work for everyone obviously, but there are some of us out here that it has helped. For me, I would use it again my next cycle just because the combo worked before and I would rather be loopy and depressed for a few weeks and pain free. I really hope the o2 will work though for you. Good luck and let us know how you are doing.
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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