Author |
Topic: IT WORKED, so far (Read 382 times) |
|
allnight9
New Board Newbie
Gender: 
Posts: 10
|
 |
IT WORKED, so far
« on: May 24th, 2005, 6:13am » |
 Quote  Modify
|
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
|
|
 IP Logged |
|
|
|
sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
Gender: 
Posts: 10429
|
|
Re: IT WORKED, so far
« Reply #1 on: May 24th, 2005, 7:52am » |
Quote Modify
|
Phil,
I hope lots of PF days for you....... 
And warm welcome to ch family!
Best wishes,
Sandie
|
|
IP Logged |
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)
|
|
|
totka2
New Board Old Timer
Oxygen
Gender:
Posts: 333
|
|
Re: IT WORKED, so far
« Reply #2 on: May 24th, 2005, 9:11am » |
Quote Modify
|
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
|
|
IP Logged |
http://www.clusterheadache.hu
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: IT WORKED, so far
« Reply #3 on: May 24th, 2005, 9:22am » |
Quote Modify
|
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
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
LadyLuv
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 549
|
|
Re: IT WORKED, so far
« Reply #4 on: May 24th, 2005, 9:57am » |
Quote Modify
|
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
|
|
IP Logged |
http://i5.tinypic.com/20s7l1l.jpg [/img ]
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: IT WORKED, so far
« Reply #5 on: May 24th, 2005, 10:05am » |
Quote Modify
|
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.
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
don
Guest
|
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.
|
|
IP Logged |
|
|
|
vig
CH.com Alumnus
New Board Hall of Famer
CHit Happens
Gender:
Posts: 4401
|
|
Re: IT WORKED, so far
« Reply #7 on: May 24th, 2005, 10:54am » |
Quote Modify
|
Prednisone tapers are effective, but are usually only used for a short term, until a different preventative like Verapamil kicks in, like Nani said...
|
| « Last Edit: May 24th, 2005, 10:54am by vig » |
IP Logged |
never, Never, NEVER quit. -Winston Churchill
|
|
|
nancyc
New Board Old Timer
Friends don't let friends post drunk on mbs......
Gender:
Posts: 384
|
|
Re: IT WORKED, so far
« Reply #8 on: May 25th, 2005, 12:17am » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
allnight9
New Board Newbie
Gender:
Posts: 10
|
|
Re: IT WORKED, so far
« Reply #9 on: May 25th, 2005, 8:08am » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
kissmyglass
CH.com Alumnus
New Board Hall of Famer
Don't Mix Triptans
Gender:
Posts: 1398
|
|
Re: IT WORKED, so far
« Reply #10 on: May 25th, 2005, 8:21am » |
Quote Modify
|
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
|
|
IP Logged |
"It does so fucking look like her" - Picasso
[img][/img]
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
   
Gender:
Posts: 14968
|
|
Re: IT WORKED, so far
« Reply #11 on: May 25th, 2005, 11:18am » |
Quote Modify
|
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
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
allnight9
New Board Newbie
Gender:
Posts: 10
|
|
Re: IT WORKED, so far
« Reply #12 on: May 27th, 2005, 11:38am » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
aprilbee
CH.com Alumnus
New Board Hall of Famer
Ain't I a stinkah!!
Gender:
Posts: 1442
|
|
Re: IT WORKED, so far
« Reply #13 on: May 27th, 2005, 11:47am » |
Quote Modify
|
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!! 
|
|
IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: IT WORKED, so far
« Reply #14 on: May 27th, 2005, 8:29pm » |
Quote Modify
|
on May 27th, 2005, 11:38am, 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.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
don
Guest
|
When in cycle I dose at 480 mg per day.
|
|
IP Logged |
|
|
|
allnight9
New Board Newbie
Gender:
Posts: 10
|
|
Re: IT WORKED, so far
« Reply #16 on: May 28th, 2005, 6:30pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: IT WORKED, so far
« Reply #17 on: May 28th, 2005, 6:51pm » |
Quote Modify
|
on May 28th, 2005, 6:30pm, 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.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
allnight9
New Board Newbie
Gender:
Posts: 10
|
|
Re: IT WORKED, so far
« Reply #18 on: May 28th, 2005, 10:35pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
don
Guest
|
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.
|
|
IP Logged |
|
|
|
allnight9
New Board Newbie
Gender:
Posts: 10
|
|
Re: IT WORKED, so far
« Reply #20 on: May 31st, 2005, 1:28pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: IT WORKED, so far
« Reply #21 on: May 31st, 2005, 1:51pm » |
Quote Modify
|
Sorry to hear that Phil.
You better give the hospital feedback regarding your poor treatment!!!!
Hang in there!
E
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss