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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> medications.....?
        
(Message started by: Yorky on Apr 19^th, 2007, 5:28am)

Title: medications.....?
Post by Yorky on Apr 19^th, 2007, 5:28am

medications
does anybody feel....that you find something that works.

your next episode...comes back ...with a raging anger..(as if he as been sat , planning his next move)

in the past 4 years...this thing as been scaling......to a new level, this time

i will start in short where it all began.

10/12 years now.....very mild first 6 (did not bother with docs then....)
attacks every 2 years.

went ot docs...probably the year 2000, or there abouts.

spent the next 5 years, waiting for diagnosis.

been on everything on this board(except rc seeds ?)

but not too sure , if the meds worked or the beast just run its coarse.

but the last 2/3 years it as become more often and more severe.

i have just had 2 weeks of hell...10/15 attacks aday..all 8..9...10....(hospital 4 the 1st time.....humilated their...would rather, jump under a truck...than put up with their...innadaquecy.)

well next tuesday...i have to stop taking prednisolne (yeah thats right no taper just stop ?)
but it as let me be myself...for the past 4 days

anything that starts to break through..3/4 a day
is swiftly put to bed with oxygen.

but today i can feel almost a bulge...as if i am going to have a monster any minute.
i am only on 30mg pred..but need to know, if i can go higher and for longer.(or will this just feed the beast..some more strength ?)

ffs worried...sorry to ramble

Title: Re: medications.....?
Post by Bob_Johnson on Apr 19^th, 2007, 9:35am

Look at the "medication" button, left, for a rough survey of our experience.

The most current article written by one of the better doc in the U.S."

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: medications.....?
Post by TxBasslady on Apr 20^th, 2007, 6:04pm

Prednisone should be tapered, darlin.

I did a 15 day taper.....started with 60mg. per day for 3 days, then tapered down till I was at 10.

There are probably 100's of ways to taper.

I hate that you're having such a rough go, babe. Doesn't sound like the current pred dosage is working. Maybe you should contact your doc....

Of course, I'm not a doc....and certainly have not a clue how the UK doc's operate....but popular opinion is that this med should be given as a taper.

My bestest vibes to ya, sweetie,

Jean

Title: Re: medications.....?
Post by TxBasslady on Apr 20^th, 2007, 6:19pm

Hey sweetie,

I just looked at my pred bottle for taper instructions. Doc actually gave me choice of 2 tapers.

20mg. 3 x's a day for 3 days
20mg. 2 x's a day for 5 days
20mg. 1 x a days for 2 days
1/2 (10mg.) a day for 5 days.

Next taper:

20mg. 2 x's a day for 5 days
20mg. 1 x a day for 2 days
1/2 (10mg.) a day for 5 days.

This is for information only, Yorky. I'm not advocating that you do either. You should contact your doc.

The first taper I listed above is the taper that gave me 197 total painfree days. The second taper which I did a year or so after the first, only gave me 42 total painfree days.

I took no prevent meds...just the pred.

I hope the info helps ya to see how the taper works.

Jean

Title: Re: medications.....?
Post by BB on Apr 20^th, 2007, 7:33pm

Prednisone is a steroid that normally our own adrenal glands ( on top of your kidneys ) secret them in response to stress and inflammation. Taking extra steroid will suppress the glands and they may or may not stop working for a little while.

Therefore the general rule is prednisone needs to be tapered off slowly. How slow it should be depends on the physical well being state of the patient. If one stops too suddenly especially on a high dose then the adrenal glands may not kick in and start working again quickly enough and you may go into an endocrine shock state which is dangerous and very unpleasant.

Having said that, some drs feel that doses around 20 mg or so maybe low enough that one doesnt need to taper. There doesnt seem to be any hard and fast rule about this. I have seen patients with severe osteoarthritis being on maintenance dose of 25 mg per day and their adrenal glands still work fine.

So its best to check with your doctor, who hopefully knows you well so that he/she can determine what is best/safest for you.

Regarding how high the dose should be for you, again you need to check with your doctor about that. My husband was originally given 50 mg per day which the neurologist said should be "plenty ", but it didnt work so he increased it to 75 mg and it worked well then.

Prednisone is very individualised that way so one shouldnt follow another person's regime.

Check with your doctor. I know its frustrating when you encounter an incompetent one or one who doesnt know much about CH. Spend some time researching the condition and the medication yourself and look for a doc who is experienced in treating headaches. It will be time well invested.

Take care and painfree wishes to you.

Annette

Title: Re: medications.....?
Post by Yorky on Apr 20^th, 2007, 7:56pm

cheers bb (were you been lately)

hes got me on 30mg