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Topic: 6 years free about to go down the tubes (Read 639 times) |
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chucknot
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6 years free about to go down the tubes
« on: Feb 14th, 2007, 11:28pm » |
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I will not go into excess at this time but I have been aware of and looked at the site here for some years. Fortunately, for 6 years I could forget about it. Unfortunately, "it's back..."
Anyway, the short of it is now that I have a Nuerologist that say's he can put me in the hospital for 3 days with an IV feed of Prednisone and Demerol and put an end to a series at the get go?
Any feedback on this????
My previous experiences had me convinced that everything is just Voodoo...because I noticed that just like O2 etc... that sometimes absolutely nothing worked and sometimes absolutely nothing did not work; That is to say "seizures"/headaches abated or ran course during my 3 month bouts whether I used something or I used nothing. But this guy informs me that previous pill prednisone dosages by other neuroligists can not work and blah, blah, blah.
For the last 6 years I have practiced my own medical theory...apparantly it was all just serendipity and no efficacy...alas, the desperate efforts of the superstitious cluster sufferer.
So, what say anyone about the IV?
Thanks in advance.
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Ob1kanobee
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Re: 6 years free about to go down the tubes
« Reply #1 on: Feb 14th, 2007, 11:49pm » |
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Sounds like you need to see a new Nuerologist. Will be interesting to see what the others have to say 
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chucknot
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Re: 6 years free about to go down the tubes
« Reply #2 on: Feb 14th, 2007, 11:55pm » |
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Well, of course, I have seen other neurologists prior to this guy. Very nearly they all seem well, a bit neurotic.
Lots of money, no production. Just alone with the pain out of their offices.
At anyrate, I figured, an IV of prednisone sounded like a step toward the grave.
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Ob1kanobee
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Re: 6 years free about to go down the tubes
« Reply #3 on: Feb 15th, 2007, 12:13am » |
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I don't know much about Prednisone except that most around here talk about it in a pill form and a taper. It is usually taken until something else kicks in.
I am episodic and I took Kudzu and it worked for me. Made my cycle shorter and headaches were not as strong.
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chucknot
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Re: 6 years free about to go down the tubes
« Reply #4 on: Feb 15th, 2007, 12:32am » |
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yep, well....so it goes. I was at the last point of pain ready to fly to amsterdam and try LSD because some suggested its effectiveness...mortgage the house and fly... But I found most things do not work. If something seems to work sometimes but not other times you will usually find the same thing about nothing working. If in the throws of it and you happen to stub your toe and your CH starts to melt away...two hours later with the next one you will be kicking the hell out of anything to activate that toe again...all to no avail. It is simple probablility...we are not talking about cycling immunities like a built up permenant immunity to an antibiotic. No such thing exists. Things work or they do not. And we will all desperately try anything...really just about anything. Read about a guy that had his wife drive while he hung his head out the window in sub zero International Falls...well, shoot that would certainly distract you if not freeze you into paralysis.
STILL IN THE ABSENCE OF RATIONAL VOICES I MIGHT GO AHEAD AND TRY THE IV...if I live, I'll tell about it.
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chucknot
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Re: 6 years free about to go down the tubes
« Reply #5 on: Feb 15th, 2007, 12:45am » |
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Well, guess there is a long list of things yet to try...suppose I may even add Kudzu. I have not even dented the medical texts possibities yet. Thanks for your imput.
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MJ
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Re: 6 years free about to go down the tubes
« Reply #6 on: Feb 15th, 2007, 1:36am » |
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Hi Chuck
Did doc say why other neuros pred pill doses dont work.
Even with the worst case "other" needs for prednisone its usually in a pill form.
Demerol is questionable for CH its not one I remember trying just for CH.
There are a lot better drugs and alternative meds to try. Maybe even better informed docs.
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MJ
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BB
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Re: 6 years free about to go down the tubes
« Reply #7 on: Feb 15th, 2007, 2:21am » |
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They do that here in Australia, IV Prednisone and Demerol ( Pethidine ) which is a narcotic pain killer PLUS IV DHE , quite effective for difficult CH and yes it can break/stop the whole cycle if you are lucky.
Can make you rather ill too though.
Good luck with the treatment.
Painfree wishes to you.
Annette
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MJ
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Re: 6 years free about to go down the tubes
« Reply #8 on: Feb 15th, 2007, 2:45am » |
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on Feb 15th, 2007, 2:21am, BB wrote:
I know a few here have said its a good way to go with the DHE. Unsolved comes to mind. Seems he gets mixed results and a few weeks break at best.
Maybe he will show up soon.
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MJ
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BarbaraD
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Re: 6 years free about to go down the tubes
« Reply #9 on: Feb 15th, 2007, 7:00am » |
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When I was episodic, the DHE (and Reglan for nauseau) IV would work to break the cycle close to the end (for some reason it never worked at the beginning of the cycle).
Demrol never worked at all for me although the docs assured me it would.
Really sounds like you need to find a new neuro that knows about CH.
Have you tried Red Bull at the beginning of a HA? Sometimes this will abort the HA. O2 for most of us, is our drug of choice. 15 liters per minute with a nonrebreather mask (the nose thingy is a waste of time).
Let us know how things work out.
Hugs BD
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chucknot
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Re: 6 years free about to go down the tubes
« Reply #10 on: Feb 15th, 2007, 9:08am » |
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Thanks for all. As for the question for his view on why pills did not work is that the shock effect was not as profound as a massive and shorter IV dosage. He is European eduacated, Indian Nuerosurgeon, but only lic. here in the US as a neurologist.
After that all of his suggestions are very traditional.
In actuall fact, to be accurate, I have not been free of pain the last 6 years...I just have had ephemerals or "shadows" and the relative pain of that is acceptable/managable. Anything, as you guys know, that leaves me able to navigate life is just ok.
Thanks for all .
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Ob1kanobee
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Re: 6 years free about to go down the tubes
« Reply #11 on: Feb 15th, 2007, 6:26pm » |
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If your not getting hits and just shadows and you have been dealing with it, you should try the Kudzu. Within a week or two, you will know if it works. If it doesn't then go for the hospital treatment if you want.
I have never heard of anyone getting shadows for years without getting hits. If you go the Kudzu route, you need to stick to the regimin. There is a kudzu link here.
If your only getting shadows and not hits  it sounds like what the Doc says might work. Yet so might LSA treatment.
You could also be lacking magnesium or maybe not drinking enough good fluids like water?
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the_watcher
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Re: 6 years free about to go down the tubes
« Reply #12 on: Feb 15th, 2007, 9:55pm » |
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My husband had a doctor that also had ch. He had 2 attacks a year and would go to the hospital and literally get knocked out for about 3 weeks. I don't know what they would pump into him. Even recommended it to my husband. Guess he could afford it, but we couldn't. Anyway, my husaband has had some success in the past breaking his cycle (at the back side of a peak by a day or so), by getting an injection of 50Mg Talwin and 25Mg Phenergan. But, of God help him if he didn't catch the cycle just right. They would hit him with a vengence after the shot wore off. Hard to find a doctor now that will keep the Talwin in their office for him. Demerol and Phenergan just don't work nearly as well.
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thebbz
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Re: 6 years free about to go down the tubes
« Reply #13 on: Feb 15th, 2007, 10:48pm » |
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Being the recipient of a couple of rounds of the DHE IV drip I shutter at the experience. One with a detox period ..because of the triptans. Dont do it unless its intractable. Ultimately the pain will dictate. If it gets so bad..hey.
There is alot of other less invasive stuff out there as MJ said.
I had one nurse start the DHE drip and then wander around the treatment room looking for the proper syringe to inject the reglan...all the while I'm convulsing from the DHE. My wife almost killed her. I almost killed her boss.
all the best
by the way none of the pain killers will touch CH. They do however afford the ability to breathe and sleep when its bad.
jb
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| « Last Edit: Feb 15th, 2007, 10:50pm by thebbz » |
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chucknot
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Re: 6 years free about to go down the tubes
« Reply #14 on: Feb 15th, 2007, 11:21pm » |
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"I have never heard of anyone getting shadows for years without getting hits. If you go the Kudzu route, you need to stick to the regimin. There is a kudzu link here."
Well, it's a relative thing here like for most of the folks here...few years ago I let a tooth and jaw abcess to near hospitalization 'cause I just figured that what I was feeling was the first presentation of my clusters coming back (why many years ago before CH discovery I had a lovely number of root canals that never worked)...I always handled pain well, but after clusters ALL OTHER PAIN IS TRIVIAL.
So, what i have considered 6 years of ephemerals could in fact be (I have conjectured), episodic turned chronic at a reduced rate of pain as compared to my 19 years of twice a year for 2 to 3 months of well, hell. I know everytime the symptoms spike I go on red alert with absolute desperation. So they are spiking now and I am guessing the bust cometh soon. There is too much current manifestation and pain
Now the thing is I am getting older and I just do not seem to be able to force myself through pain as well...if being out of work 6 weeks last time and begging my wife to shoot me in one less lucid moment is an indicator.
Got no id...read a lot, theorized seemed like a lot of case studies I read out of an Albq, NM publication suggested a lower level of pain for many chronic sufferers...But there were obvious non-clusters in the study and plenty of chronics that described the big trauma. But I digress...and thanks again everyone...I can see where I should have originally posted under a question of the specific process. Thankfully, lot of participation, curiousity and varied knowledge and experience here.
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chucknot
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Re: 6 years free about to go down the tubes
« Reply #15 on: Feb 15th, 2007, 11:30pm » |
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And, Thebbz...thanks..I am reflecting on that for sure.
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Ob1kanobee
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Re: 6 years free about to go down the tubes
« Reply #16 on: Feb 16th, 2007, 12:09am » |
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I can understand the idea of it being relative as i also had similar issues until I found out about the "KIP Scale"
which the folks on here refer to so often. After studying it I was clearly able to discern the differences in pain I was having.
Have you had a chance to check that out yet?
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chucknot
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Re: 6 years free about to go down the tubes
« Reply #17 on: Feb 16th, 2007, 12:47am » |
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Yeah, looked at the kip scale a several years ago. But (not to whine at all) I have had a wee bit of a bunged up body through my life starting with smashed up vertebra at 8 and other things so, I kind of developed a pain denial system early on without benifit of self awareness. My parents once taking a spanking to near beating because they thought I had some neural deficit and started freaking out...but I had just shut down, shut down all acknowledgment of pain...hence the abcess...not the first time I have had doctors in my life marvel at the pain deal. One doctor friend even suggested in humor that I liked pain. NOPE, NOT A MASOCHIST. I just shut down. But the clusters...can't shut them down when they get going strong...nope, no sir. So, I guess I am sorta all or none...at this moment I feel strong pain but managable...I am guessing for some not so managable, for others maybe trivial.  had to go to the doc a few weeks ago for an respritory infection...I said I was not feeling well the last couple of days...the wife squaks...try the last two months...it is just subconscious habit...not strength or will or whatever. Guess it is a good thing to have my wife as a keeper of the demented.
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Charlie
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Re: 6 years free about to go down the tubes
« Reply #18 on: Feb 16th, 2007, 9:13pm » |
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You might want to give this a try. It 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. 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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chucknot
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Re: 6 years free about to go down the tubes
« Reply #19 on: Feb 17th, 2007, 12:26am » |
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I will indeed try that. I can think of similar techniques we all tend to develop in our lives to curb behavior or relax. I am glad you brought that suggestion up.
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