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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> At last someone has diagnosed me!
        
(Message started by: barnythebear on Sep 26^th, 2007, 5:54am)

Title: At last someone has diagnosed me!
Post by barnythebear on Sep 26^th, 2007, 5:54am

After 20+ years of being told I have a sinus problem I've seen a specialist who said in 10 minutes he knows what the problem is. Now I've been on your site I know I'm not as bad as some but doesn't it feel good to have friends. I've been proscribed PREDNISOLONE and taken my first course this morning. Heres hoping!

Title: Re: At last someone has diagnosed me!
Post by davyp on Sep 26^th, 2007, 7:15am

Hi Barney,

Welcome aboard just sorry that you have a need to be here.
Just a few questions.

Do you just have the pred or did the specialist give you any other meds?

Are you episodic or chronic?

How many attacks do you have a day?

It might be worth your while taking a look at OUCHuk at www.ouchuk.org or giving the helpline a call on 01646651979, it is an answer phone but if you leave your number 1 of the volunteers will get back to you as soon as possible.

Dape

Title: Re: At last someone has diagnosed me!
Post by Guiseppi on Sep 26^th, 2007, 10:28am

A warning about the prednisone. It will totally stop the headaches for me...and this is a big but!!!!!!! But as soon as I stop taking the prednisone, I will get slammed with headaches 10X worse then the ones I had before the prednisone.....if I'm not taking anything else.

Prednisone is used mostly as a transitional drug in the treatment of cluster headaches. Long term use causes some pretty nasty health issues so it's best not to go past 2 weeks with it. I take prednisone when my cycle starts, while I start taking my lithium. Lithium takes about 2 weeks to ramp up in my system and the prednisone keeps the beast at bay during that time.

So what Davy was alluding to, and what I'll ask, is are you taking anything else? Some of the common preventatives people use while on cycle are verapamil, lithium and topomax...in no particular order.....it would be wise to get put on one of these so you're not left "naked" when you stop the prednisone.

Then we need to talk about an abortive. Something you take when all else fails and you start to get a headache. You're first line abortive should be oxygen. Pure oxygen at a high flow rate, 15 lpm or more, started at the first sign of a headache, will abort for me in less then 10 minutes. there are several others to read up on. Also keep some energy drinks on hand containing caffeine and taurine, rock star, monster etc....some can abort a headache by slamming one of those down.

So glad to hear you're out of the dark with a diagnosis, now you have much reading to do as you'll find you usually have to educate your doctor on these things. Welcome to your new home.

Guiseppi

Title: Re: At last someone has diagnosed me!
Post by barnythebear on Sep 26^th, 2007, 11:16am

I've spent a fair bit of today on this site what a godsend. I'm just on the Pred at the moment to see how I go. I'm about 2 weeks into the cycle having been clear for 4 years. Before that I was a fairly regular one a year man seemed to start in the winter and then change for a number of years to the spring, hence everyone thinking sinus issues. The last time was September and guess when this one started. I was wondering if with a four year gap these are going to go away, or am I just deluding myself pushing 57 now.
I'll take on board all your comments and at least I'm now armed with some info to take to the doctors.
Thanks once again guys it's good to know I'm not alone and definitely luckier than some.

Title: Re: At last someone has diagnosed me!
Post by Guiseppi on Sep 26^th, 2007, 11:26am

I keep hoping they'll go away with age...as I've gotten older my remissions have gotten longer....I'm 47 now and my best break was almost 2 years. Sail pappy is close to a hundred......well maybe not that old but way old...and has assured me age is no guarantee of being CH free! ;;D Jonny on the other hand is younger then me and after being chronic forever the damned things just stopped. So there'e always hope, and more importantly there is always this board!!!!

Guiseppi

Title: Re: At last someone has diagnosed me!
Post by barnythebear on Sep 26^th, 2007, 11:26am

Ops sorry forgot to answer your questions Davey. As you have probably gathered I'm episodic and always have been with a 3- 4 week cycle the last one was about 2.5 weeks. At the moment they are night time ones regular as clock work 2 hours after bed, does it pay to stay up all night!!!!, but they do vary. I've had them as daytime ones as well but always nightime seems to be involved. I seem to be having 3 to 4 a night but I've been down too 1 a night over the weekend and that's with a few drinks which has suprised me, maybe I should just get blasted.

Title: Re: At last someone has diagnosed me!
Post by Wayne on Sep 26^th, 2007, 5:25pm

Welcome Barney, the Pred should be a very good first step in the PF direction, please make sure to follow up.

Wishing you many PF days mate!

Title: Re: At last someone has diagnosed me!
Post by barnythebear on Sep 27^th, 2007, 2:14pm

Thanks for the kind thought I've had my first good nights sleep in almost three weeks. I've somehow coped with the pain in the past but now I'm into getting on top of this with the help of you guys.

Title: Re: At last someone has diagnosed me!
Post by Wayne on Sep 27^th, 2007, 2:59pm

Just in case nobody mentioed it before - Redbull, Redbull, Redbull. Try it, if it works for you you always have an escape hatch.

Title: Re: At last someone has diagnosed me!
Post by barnythebear on Sep 29^th, 2007, 5:44am

Yes tried the Redbull last night as I woke and thought one was coming on.......
Excellent but so b****y sweet and fizzy. Who cares it seems to work!!!!

Title: Re: At last someone has diagnosed me!
Post by barnythebear on Oct 9^th, 2007, 6:04pm

Seem to be out of the cycle now guys. Just the odd shadow or mild pain through night. Your advice has been great and I can't thank you all enough for your advice. The melatonin and red bull certainly made the nights more tolerable.

Title: Re: At last someone has diagnosed me!
Post by LeLimey on Oct 12^th, 2007, 4:52pm

Barny I'm just up the road from you in Notts - one little tip for the red bull - open it and leave it in the fridge then drink it "flat" - its a lot easier! You can take it out that way too by pouring it into a bottle or something - handy little beastie isn't it?!

BTW Asda's own (or any supermarkets) works just as well at a fraction of the cost - Asda have Blue Charge at 29p a can - less than a quarter of the price of red bull!

Nice to meet you and I hope you don't need this tip until next year

Helen

Title: Re: At last someone has diagnosed me!
Post by barnythebear on Oct 14^th, 2007, 5:56pm

Thanks LeLimey. Yes we've found Sainsburys as well. God the b****y taste but what the hell if it works. I like my drinks bitter and hoppy not sweet and sickly. This is my first trip for 4 years almost to the day, I thought it may have gone away! No such b****y luck!! Thanks for the advice I don't like my beer fizzy either so this might help the red bull go down easier.

Title: Re: At last someone has diagnosed me!
Post by barnythebear on Nov 6^th, 2007, 4:55pm

Just thought I'd drop back in to see how things are going. Seems strange but now the beast has gone away I wanted you to know I'd not left you but still read some of the posts. Pain free days to you all