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        New Message Board Archives >> 2005 General Board Posts >> IT WORKED, so far
        
(Message started by: allnight9 on May 24^th, 2005, 6:13am)

Title: IT WORKED, so far
Post by allnight9 on May 24^th, 2005, 6:13am

I'm a newby, not sure if this is the right place to post this. I found this sight last week and read almost everything I could, called my family Dr. and asked him about Prednisln, He decided that methylprednisln was better at 8mg a day for 7 days then 4mg for 5 days and 2mg for 3 days. so far it has worked PFDAN now since Saturday. It feels great to sleep. I actually had a sinus headache today that I took 2 Advil for no problem. I'm afraid of hoping that this will continue the beast has a way of returning with vengence..Phil

Title: Re: IT WORKED, so far
Post by sandie99 on May 24^th, 2005, 7:52am

Phil,

I hope lots of PF days for you....... :)

And warm welcome to ch family! :)

Best wishes,
Sandie

Title: Re: IT WORKED, so far
Post by totka2 on May 24^th, 2005, 9:11am

Phil,
8 mg sounds a bit low (for me) but you're PF and it's the best news. Hope it's a long-lasting effect.

Steve

Title: Re: IT WORKED, so far
Post by nani on May 24^th, 2005, 9:22am

I'm glad you're getting some relief. Phil. :) Did the dr start any preventatives while you're doing the taper? Generally, the taper is used to curb pain while your prevents kick in. Just wondering. PF wishes, nani

Title: Re: IT WORKED, so far
Post by LadyLuv on May 24^th, 2005, 9:57am

Phil I'm Praying that you will have many PF days... and welcome to the family..

This is the one place that I have found comfort and understanding and someone is there for me 24-7...

Peace & Blessings
Lady Luv

Title: Re: IT WORKED, so far
Post by Bob P on May 24^th, 2005, 10:05am

There is a big difference between regular prednisone and methyl prednisolone. I did a prednisone taper a while back. 60mg a day and it took 5 days to kick in and then only some success.

Saturday I started methylprednisolone, Medrol DosePak. It gives instant relief. 24mg the first day, decreasing 4mg each day.

Title: Re: IT WORKED, so far
Post by don on May 24^th, 2005, 10:06am

Quote:

I'm afraid of hoping that this will continue the beast has a way of returning with vengence.

Chance of the CH returning are pretty good unless you are on a preventative.

Title: Re: IT WORKED, so far
Post by vig on May 24^th, 2005, 10:54am

Prednisone tapers are effective, but are usually only used for a short term, until a different preventative like Verapamil kicks in, like Nani said...

Title: Re: IT WORKED, so far
Post by nancyc on May 25^th, 2005, 12:17am

wish i could take prednisone...getting hit really hard rite now and nothing is helping but imitrex injections...no preventatives, etc...dont know what is going on but the Doc thinks the cervical thing is triggering off the trigeminal nerve, etc....know I am under alot of stress but this sucks bigtime.....nancyc

Title: Re: IT WORKED, so far
Post by allnight9 on May 25^th, 2005, 8:08am

Its Weds still PFDAN but I have had a couple of shadows. I'm not sure if I am at the end of my cycle or if the meds are working. Thanks for the support, I was damn crying when I found this site and finding out that I am not alone really helps. My wife trys to help and understand but she just does not know....Thanks again Phil

Title: Re: IT WORKED, so far
Post by kissmyglass on May 25^th, 2005, 8:21am

Hey Phil,
As has been said, be prepared for the beast to return when you get near the end of the prednasone especially if you are not getting a preventitive (Verapamil), Verap takes a week or so to kick in so maybe you should ask your doc about it asap.

Send the wifey pooh here to read,maybe she will understand better. There are lot of Awesome supporters around here...
Good Luck!
Kev

Title: Re: IT WORKED, so far
Post by Charlie on May 25^th, 2005, 11:18am

Welcome aboard and I'm sorry you have deal with this horror. Most of these drugs weren't used or around during my attacks but pay attention to these people. They know their stuff.

You'll probably need a preventative for this thing. As they say, the tapers run down.

Here is the non-invasive technique that worked well for me:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
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.

I hope this technique is helpful and I wish you the best of luck

Charlie

Title: Re: IT WORKED, so far
Post by allnight9 on May 27^th, 2005, 11:38am

Well as everyone predicted My CH beast came back Weds. night after a good racquetball match, and has been visiting me 3-4 times on Thursday and Thursday night. I have tried Verapamil several years ago but it did not work...I,m wondering if I got dehydrated and that brought them back...Phil

Title: Re: IT WORKED, so far
Post by aprilbee on May 27^th, 2005, 11:47am

keep on truckin and using your meds, and LISTEN to these people.. wer are all experts in our own right, and I get the BEST advise here...

wishing you PFDAN!! ;)

Title: Re: IT WORKED, so far
Post by BobG on May 27^th, 2005, 8:29pm

on 05/27/05 at 11:38:39, allnight9 wrote:

I have tried Verapamil several years ago but it did not work...

Do you remember the dose? 120mg/day? 240? Some C'heads have ramped up to 600 or more before finding relief.

Title: Re: IT WORKED, so far
Post by don on May 27^th, 2005, 9:02pm

When in cycle I dose at 480 mg per day.

Title: Re: IT WORKED, so far
Post by allnight9 on May 28^th, 2005, 6:30pm

I do not remamber what dose for verapamil but I think it was up there. 0 CH today but I had rough night last night not looking forward to sleep tonight. even the faithful imitrex did not help much...hil

Title: Re: IT WORKED, so far
Post by BobG on May 28^th, 2005, 6:51pm

on 05/28/05 at 18:30:10, allnight9 wrote:

not looking forward to sleep tonight.

Have you tried Benadryl or melatonin before bed time. It may help keep you out of the REM sleep mode where the devil lives.

Title: Re: IT WORKED, so far
Post by allnight9 on May 28^th, 2005, 10:35pm

Thanks I will try it tomorrow, right now I am fightin the beast, I started to doze on the couch and woke up with him charging full speed, took a fioranol w/cod (45 min)
debating on a shot of imitrex if I do not go right to sleep the devil may return for round 2, sorry for the spelling can't think real clear or see though the tearing eye...Phil

Title: Re: IT WORKED, so far
Post by don on May 28^th, 2005, 10:43pm

That sucks. Careful with the fiorinols, they aren't much good for CH anyway.

Get some melotonin tommorow or tonight if your near an all night pharmacy.

Title: Re: IT WORKED, so far
Post by allnight9 on May 31^st, 2005, 1:28pm

Had a 10 last night, went to the E.R. asked for O2 when I checked in, usually they set me right up, but last night I was told no and the nurse put me in a dark room and promptly forgot I was there. 30 Min. went by, The Beast went away and I started to leave and saw the nurse talking with her buddies and lucky for me my wife grabbed me before I got arrested. I called to complain today like that will do some good...Phil

Title: Re: IT WORKED, so far
Post by E-Double on May 31^st, 2005, 1:51pm

Sorry to hear that Phil.

You better give the hospital feedback regarding your poor treatment!!!!

Hang in there!

E