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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> When do you stop the meds?
        
(Message started by: Frosty on Aug 25^th, 2005, 8:13pm)

Title: When do you stop the meds?
Post by Frosty on Aug 25^th, 2005, 8:13pm

I'm just starting out on my Spring cycle of CH's and as soon as I got my first I started taking Prednisone. It works within a day or two and I only get the odd twinge.

The question is when do you draw the line and say "Okay, I think I can stop taking the Prednisone now."

Last season I started taking Prednisone for the first time and I'm quite nervous about when I stop taking it. I was on it for three weeks last time. I'm currenlty at the end of my first week this time round.
At the moment I only get some background pain in the mornings. I'm never sure whether this is because it's only a very mild episode or because the drugs actually work really well.

When do you bite the bullet?

Title: Re: When do you stop the meds?
Post by E-Double on Aug 25^th, 2005, 8:20pm

Is that all you take?

Prednisone should be tapered.

You take it on a schedule and gradually decrease it until finished.......That's when!

While you are tapering the prednisone you should (if taking) be increasing whatever preventative medication (ie Verapamil) to a therapeutic level.

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

Good luck!

Title: Re: When do you stop the meds?
Post by clusterkat on Aug 25^th, 2005, 8:43pm

good evening group,
its been my experience suffering with this curse,
that there comes a time,
when you have to say to yourself;
"self, its time to do battle without meds"
im currently off all preventive meds for the moment,
there has been no big change in my cycles,
with or without them.
with the exception of side effects.
that all most killed me while taking them.
*sighs deeply*
depends on your pain tolerance too.
i have a very high tolerance.
all i take now is midrin (migrazone) "again"
when i have a hit.
the side effect are less narley.
its taking all my coping skills,
pain debiltates my daily happiness,
as i plan a joyous occassion.
sometimes i feel like a zombie-bride.
medicated till death do U/us part.
im doing whats best for me @ this time.
sometimes you just have to mix it up,
to find the right balance.
hang in there.
^kat

Title: Re: When do you stop the meds?
Post by StressFree on Aug 27^th, 2005, 2:47pm

As E-Double stated, taper off of the prednisone after begin on the Verapamil for a week or two. Stay on the verapamil for at least a few weeks after finishing the prednisone taper. If only getting shadows at that time, I quit taking the verapamil too. Surprisingly, the shadows seem to leave a few days to a week after quiting the verapamil. I usually take Alleve or Ibuprofen when getting nervous over the stronger shadows during the last week or so. If any severe attacks breakthrough, I'd get back on the verapamil immediately and start some abortive med too. Maxalt 10mg tabs (sometime needed two) worked well for me last round, stopping attacks within 15 minutes. Read some of the archived posts on Prednisone dosage and symptoms - nasty stuff, but works wonders for many of us! Just use the search function. Best of luck! Rich

Title: Re: When do you stop the meds?
Post by allan_r on Aug 27^th, 2005, 8:37pm

[quote author=clusterkat ,
that there comes a time,
when you have to say to yourself;
"self, its time to do battle without meds"
^kat
[/quote]

I did the same back in February- and have been able to abort any H/A's with O2. I did just try a 24 day prednisone taper though to try to knock the cycles out, as i averaged 3 H/A days per week since February. I hope it works to change the very short cycle that I have been runnng. Prior to February the cycles were one week on and three weeks off.

I was tired of the prevents, and they only seemed to work with me for about 3-5 months each before losing efficacy anyway. The side effects were catching up as i moved upward and onward. Now, I have a generally better physical and mental outlook without the meds.

As long as the O2 keeps working, the H/A pain is 20 minutes, and recovery about an hour. Luckily, on the days I get H/As- I generally only get one.

So- to answer the question on the board- try to stop taking meds as soon as you can...stand to.

and
taper the Prednisone.

-allan r.

Title: Re: When do you stop the meds?
Post by AussieBrian on Aug 27^th, 2005, 8:57pm

Frosty, g'day from another Aussie. There's a few of us around and feel free to PM me anytime if I can help in any way.

As for stopping meds, it's entirely a personal decision but knowing all about the particular medication is important, too. In this respect you'll get far better info from the pharmacist than you'll ever get from a doctor.

As for myself, I gave them all away 10 years ago. Best decision I've ever made but again, it was a personal decision.

Incidentally, have you ever tried oxygen? It's by far the safest and least toxic therapy available to us and results can be remarkable. Actually getting hold of it can be a run-around but Barry over in Karatha has a new recipe that short-circuits the system.

Either way, kindest regards and welcome aboard.

Cheers and beers,

Brian up north.

Title: Re: When do you stop the meds?
Post by Frosty on Aug 28^th, 2005, 6:41pm

Thanks for your advice - especially the tapering - I wasn't told about this!

Aussie Brian - maybe you can help.
I had a bad day yesterday - one broke through and was a nasty 8 on this kip scale I've just looked at.
I put up with it doing the usual pacing around the room muttering obscenities for an hour and a half. I couldn't take it any longer so I got the wife to drive me to the local hospital about half an hour down the road. I went armed with a letter that my neurologist has given me saying I need O2 ASAP and to bypass seeing any doctors etc. Of course I was kept waiting another hour in the A&E ward, by which time it started to subside so I just walked out in disgust. Even with protests of pain and agony my request for some oxygen was refused and I had to 'wait in line'

What's the best way of sourcing O2 so I can have it in my house and not even have to bother going to a hospital?
Can you get a small portable bottle of the stuff?

Thanks in advance for any suggestions.

Title: Re: When do you stop the meds?
Post by AussieBrian on Aug 28^th, 2005, 8:46pm

Ah, Frosty. Welcome to the O2 circus. Last time I tried to get it I needed a specialist's script, as opposed the a GP's. The reason you need it at home you just found out, by the time you get to hospital it's too late.

Barry posted a beaut recipe to Jacqs in Ceduna on how to get around the system. Gimme a minute and I'll chase it up for you.

B.

Title: Re: When do you stop the meds?
Post by AussieBrian on Aug 28^th, 2005, 8:54pm

Found it (the marvels of modern science!)

"Hi Jacqs

Nice to hear the pian is decreasing in duration, at least thats some sort of a break.

If you are having trouble getting O2 it might be worth doing what I did, set up an account with BOC if there is a depot in town, purchase your own regulators or hire the oxyviva set up from them for around $24.00/month plus the cost of the gas.

If you decide to buy your own it should cost around $250.00 total for the Oxy regulator about $100( the ordinary welders one works ) a flow regulator $100 a non rebreather mask can be got from the ER as they dont re use them, when you go to the ER for your gas hit ask for the mask to take home, I have got a D size bottle I cant remember what the cost of the gas was and there is a yearly rental on the bottle.

Hope things keep looking up
Kind Regards
Barry"

Title: Re: When do you stop the meds?
Post by Frosty on Aug 28^th, 2005, 8:56pm

Thanks mate. ;)

I'll make some phonecalls!

Title: Re: When do you stop the meds?
Post by Frosty on Aug 29^th, 2005, 6:13pm

I got onto BOC and spoke to a very helpful guy there. He said they could supply all the gear as long as I had a letter from my GP.

I spoke to my neurologist and he's getting the letter done ASAP - he's also trying me out on the Verapamil so I can tailor off the Prednisone.

Thank you all again for your advice and help.
;)