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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hi, new to this group... 
        
(Message started by: deanbutler on Sep 17^th, 2007, 3:57pm)

Title: Hi, new to this group...
Post by deanbutler on Sep 17^th, 2007, 3:57pm

Hi Everyone,

First time here so let me give you some background...

Been a sufferer since i was about 22 (I am now 32) and get attacked for approx 2-4 weeks at the end of the UK Summer (now-ish) every year without fail, like clockwork.

My attacks have got worse over since they started and over the 10 year period I have seen 3 Doctors and 1 Neurologist Referral (which was great to have some aknowledge my condition).

I started Imigran some 6 years ago which I highly recommmend in the injection form (although it had no effect just the other night, the fist time this has happened but I think the headache was truly established so I had another one an hour later which then managed to shift it) as it manages to help me in 90% of attacks.
.

At my Neuro appointment the guy was truly shocked I hadn't been referred before and told me there were 3 things they can do to help.

1 - to try Predisolone as they can quash them quickly
2 - to try another drug that will 'contain' them
3 - worst case take a tablet everyday for the rest of my life which means they wont ever come (apparently)

So I feel quitre positive I am getting good assistance and advice and urge you all to never take no for answer - you want refering, you want to see a speicalist!

Basically, I am in a cluster now and on Predisolone (day 2) and have had that 'nag' that is sitting just far enough off the back of my head that I dont feel compelled to get the injection kit out just yet.

Does anyone have any stories re Predisolone? Successes? Failures?

Also, a note for anyone in the UK (not sure about globally) suffering from Migraines or CH but here in the UK you can now buy Imigran tablets from over the counter in Boots and most pharmacies. TRY THEM - Sumatriptan works for me. The They really worked for me. I badger my doctor for the injection refils and get as much of it as I can get when in a Cluster but at night, if you can afford it (they are additional £8 for 2 x 50mg tabs) take one just before you go to bed - it should get you about 6 hours sleep, worst case.

Anyway thanks for listening and I hope my story gives some of you something to grab hold off or smash your head into......

Sleep as well as you can.

Dean

Title: Re: Hi, new to this group...
Post by Guiseppi on Sep 17^th, 2007, 4:28pm

and have had that 'nag' that is sitting just far enough off the back of my head that I dont feel compelled to get the injection kit out just yet.

The dreaded "shadows," when you know it's there, it just hasn't sunk its claws in yet!! ;)

Careful with the prednisone. I use it short term, usually about 2 weeks, when my cycles start up. At 30-40 mg a day it provides almost 100% relief from headaches. I use it while I'm waiting for my prevent, lithium, to ramp up in my system. Some use it as a "cycle buster" at doses as high as 80mg a day for a 10 day period to try and "break" the cycle.

It has never broken a cycle for me but does provide relief while my prevent kicks in. It has a lot of serious side effects with long term use so should only be used for short term purposes. The few times I've used prednisone, with nothing else, as soon as I stopped the prednisone I would get absolutley creamed with head banging CH's.

Also, you didn't mention oxygen. My first line abortive and one of the most popular abortives on this site. No side effects, cheap and ver effective for many.

Welcome to the board, hope we provide you with something!!!!

Guiseppi

Title: Re: Hi, new to this group...
Post by kcopelin on Sep 17^th, 2007, 5:40pm

Welcome Dean.

Sorry about your reason for being here, but this IS the best source of info on clusters.

I am very curious..what pill would one take everyday for CH? Also, are you saying that Imigran is over the counter?

I second Guiseppi-careful with the pred, it is a transitional treatment while your preventative kicks in, although I have heard of it busting cycles, what is your preventative?

Oxygen!!!

PFDAN,
kathy

Title: Re: Hi, new to this group...
Post by DennisM1045 on Sep 17^th, 2007, 7:20pm

Hi Dean,

Welcome home! I'm glad you found us but I'm sorry you had to. I'm curious too about this magic pill. I hate to burst your bubble but nothing seems to work forever on these things. But pain free (PF) time is PF time no matter where it comes from ;;D

Stick around and read everything. Folks here collectively know more than most Drs about this condition. I hope the pred + whatever prevent you're on buys you a good long break.

I second Guiseppi and Kathy on O2. It's magic if you get on it quick enough.

-Dennis-

Title: Re: Hi, new to this group...
Post by deanbutler on Sep 18^th, 2007, 3:10am

Hi All,

Thanks for your kind words and advice.

Prevent? Not sure I am on one? I have injections and nasal sprays (both Imigran/Sumatriptan) and have recently started Pred - i dont take anything else - can you enlighten
me here please?

I will write/ask my Neurologist and see if he can give me the name of tyhe Magic daily pill - He definately told me not to worry because he can make them go away forever - he just wanted to start me on the Pred first, then there was a second option and the third was a daily pill that menat they would never break through!

I will feedback as fast as possible.

Thanks again and please more info on 'prevents'

D

PS: YES, IMIGRAN 50mg TABLETS ARE AVAILABLE OVER THE COUNTER IN THE UK - GO TO ANY 'BOOTS CHEMISTS'

Title: Re: Hi, new to this group...
Post by barry_sword on Sep 18^th, 2007, 7:10am

Hi Dean, pleased to meet you. Sorry you have to be here. I was on a Prednisone taper to stop the hits in their tracks and it worked. I am very active physically and found the Pred. was very hard on my body.

I got my script for o2 and that is my new abortive. I am taking 480mg of Verapamil daily and this is keeping the beast at bay for the most part. The o2 is my first line of defense and will never be without it ever. I have it at home and a portable in my car.

May I suggest you print off the o2 info on the left of this page and take that to your Doc. It has worked for most people here. Keep us up to speed on how you make out.

Barry

Title: Re: Hi, new to this group...
Post by michael on Sep 18^th, 2007, 7:28am

Hi Dean

I have seen imigran tablets sold over the counter in chemists in the uk. They are 50mg and advertised as migrain relief. Like you say they are expensive.

I have never taken a close look to see if they are the faster acting imigran radis tablets but I don`t think they are.

I get 12 - 100mg imigran radis tablets per prescription (£6.30p). Go see your doctor, you can get these in 50mg also (I find I need 100mg). He should allow you to have these as well as your injections for you to decide which to use when. Much cheaper by prescription than over the counter.

PF wishes

Mike

Title: Re: Hi, new to this group...
Post by aloneuk on Sep 18^th, 2007, 9:34am

dean im less than 15mins down the road from you :D ;;D
ck you PM's ill be in touch !

Title: Re: Hi, new to this group...
Post by Rosybabe on Sep 18^th, 2007, 4:19pm

Welcome HOME Dean!

see you are already prepare to fight the beast, that is great!!!

Have you tried O2 and Red Bull???

Kep in contact so we can get to know you a lot better, pics, etc ;)

Wishing you lots and lots of pain free time!!!

Rosy.

Title: Re: Hi, new to this group...
Post by aloneuk on Sep 19^th, 2007, 11:22am

on 09/18/07 at 03:10:54, deanbutler wrote:

- He definately told me not to worry because he can make them go away forever

this is the bit i cant get my head around ! let us know what pill this is please !

sorry if that sounds harsh not meant to im just interested in what they are,

ike

Title: Re: Hi, new to this group...
Post by Guiseppi on Sep 19^th, 2007, 12:13pm

Don't be too hard on the doc, one of the treatment recommendations for chronic headaches is to constantly reassure the patient you care, and you CAN help him. I'm sure the doctor was trying to be reassuring......on the initial diagnosis you don't wanna tell the poor guy YOU'RE SCREWED THE PAIN WILL NEVER STOP YOU'RE DOOMED TO A LIFE OF MISERY!!! ;;D

That being said........hang on for a bumpy ride as it sometimes takes a little while to figure out a regimen that works for you. When we talk about "prevents" we're talking about a med you take when on cycle that'll reduce the severity and frequency of your headaches. 3 of the more common are verapamil, lithium and topomax. I use 1200 mg daily of lithium when on cycle and it's been my "silver bullet." Doesn't stop them all but oxygen and the occasional imitrex jab keeps me relatively sane.

It sounds like your doc actually cares and listens to you, that's about 75% of the battle believe me. Let us know what happens next!!!

Guiseppi

Title: Re: Hi, new to this group...
Post by Linda_Howell on Sep 19^th, 2007, 3:35pm

The other part of the battle and I would put it at 50% is educating yourself on cluster headaches, up to and including the alternative treatments.

I'm VERY surprised that someone hasn't already given you this link regarding 02 ;)

http://www.ouch-us.org/medications/oxygen/o2info.shtml

Title: Re: Hi, new to this group...
Post by LeLimey on Sep 20^th, 2007, 3:02pm

I can only agree with Linda, education and knowing what options you have makes it so much easier wading through the mire.

I'm only about an hour from you just up the A1 so if there is anything I can do then let me know. I can also only reiterate what Linda said about looking into O2. (Like you Linda - I can't believe no one else said it yet!!!) Oxygen is the best CH abortive I know. I can stop a hit in as little as 5-7 minutes using it at a high flow rate of 15LPM. Speak to your doctor about it, get him to look it up in his BNF. It works. If you need any more help with that let me know - it might be worth dropping into the conversation that O2 is centrally funded - ie it doens't come out of his budget and since the only licensed treatment for CH in the UK is Imigran SUbcutaneous injections - NOT pills and NOT nasal sprays and that these cost his budget 56 whopping great smackeroonies a day you just MIGHT get his attention! ;)

Hang in there
Helen