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        Cluster Headache Help and Support >> Getting to Know Ya >> Hello!
        
(Message started by: krazylegs on Feb 2^nd, 2008, 3:56pm)

Title: Hello!
Post by krazylegs on Feb 2^nd, 2008, 3:56pm

Hello, just thought I would poke my nose up from down here! Finally after two years of suffering from headache problems, and being back and forth between opthalmologists, ENT, and various GPs, another GP suggested I was suffering from cluster headaches and from all the helpful information I have found on this site, I am beginning to think he is right! After waking up on Monday morning with half a face to rival the elephant man,(I've never had a swollen face like it before), a decided nother trip to the GP was in order. No sooner was I there than he had me lined up with a prescription for 80mg of Prednislone every day for five days, and 5mg of amytriptolene (I think it's called?) every night, with directions to go back to him next week to be referred to a neuro if no improvement. The amy thingymabobs have at least enabled me to get 2 nights of undisturbed sleep, for the first time in about 4 weeks, (when this attack first began)!

I have felt from the time I started suffering from these unbearable headaches that the doctors felt there was nothing wrong and that I was imagining things. To finally read that there are people going through the same thing makes me feel at ease, and I'm reassured that this GP finally seems willing to do something to help me too.

I think I've found a new home where I'm going to feel normal for the first time in a couple of years!

Title: Re: Hello!
Post by mummymac on Feb 3^rd, 2008, 3:48pm

Krazylegs

So glad you made a post and the GP is helping.

There is lots of information to read here that will help.

Welcome to clusterville.

Tanya

PS what part of Portsmouth are you from

Title: Re: Hello!
Post by Guiseppi on Feb 3^rd, 2008, 5:07pm

Welcome to the nuthouse, so very glad you found us! A quick warning, prednisone is great as a short term fix. It will block 100% of the head aches for me. If I don't take anything else, when the prednisone wears off, I will get absolutely creamed!!!! It is not a medication you should take for a long period of time as it has some nasty side effects!

Start talking with your doctor about oxygen! Read the link on the left about how to use it. It should become your FIRST LINE ABORTIVE for your cluster headaches. I can stop a head ache in as little as 6-8 minutes just by using oxygen.

You have lots and lots of reading to do. You'll find most of your answers here! Hoping you get a short cycle this go around!

Guiseppi

Title: Re: Hello!
Post by Bob_Johnson on Feb 3^rd, 2008, 9:40pm

The Pred. will abort a cycle/attacks very quickly but they will reurn as soon as you stop using it. Doc should start you on a med to prevent/reduce future attacks at the same time (since it takes a number of days for this med to become effective).

Print both of these documents and give to the doc. They can be used as a discussion tool to plan future treatments.
---------
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
http://www.plainboard.com/ch/chtherapy.pdf
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. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)

Title: Re: Hello!
Post by krazylegs on Feb 4^th, 2008, 2:13pm

Hi guys, thanks for the advice. Stopped the pred a couple of days ago and sure enough pain has got worse again, made even worse by the fact I've now been hit with a streaming cold as well!! Will be heading back to the docs next week on my day off so hope to get some further action then.

And Tanya, I live in Fareham :)

Title: Re: Hello!
Post by mummymac on Feb 4^th, 2008, 3:55pm

I am sorry you have a cold now as well. Next week is a long way away, try to get back sooner, you don't want to suffer more than you have to .

Oxygen is the abortive of choice here for a lot of people , I haven't used it yet, doctor issues and such but I do use Imgran Injections which work in minutes to abort an attack, speak to you GP about both as both are the main abortives for CH

Many years ago I lived in Paulsgrove as a kid, my dad was in the Navy and I went Mayfield School in North End (Used to be Northern Grammer school for girls) even had a Pompey accent, hopefully that has gone now. Alright mate, have you got a cob on ;;D

Title: Re: Hello!
Post by imfareware on Feb 4^th, 2008, 7:23pm

Sorry about the headaches, and welcome!

Title: Re: Hello!
Post by jacquibim on Feb 5^th, 2008, 7:16am

Hi there, I am new on here too, just found the board this morning. Isn't it great to find that you are not alone in these things? I have been having them for 10 years or so and thought I was going round the bend. I seem to find something to help stop the ch's, have a short remission time, (about 2 months) and then bang they are back again and what I used before does not work, so have to find something new to use. never mind, there is always someone worse off isn't there? And when you read the boards - yes there is always someone worse off.

Title: Re: Hello!
Post by caoimhin on Feb 5^th, 2008, 8:53pm

Hi Krazy
I was perscribed that amytriptaline stuff as well at 5mg's a day. It wasnt really doing much for me so i checked it out on the web and found ya can safely take up to 70mg a day. So i started firing 3/4 every night instead and it stopped them from reaching that point where you think your gonna lose it. Bad point though they lasted 4hrs instead of 2. But watch out coz the first time a bammed up the dose it left me pretty out of it for a while (it was great craic!!).

Title: Re: Hello!
Post by Stinger on Feb 6^th, 2008, 6:59pm

My doctor put me on 60 mg prednisone daily for 7 days. I have three more days. This is the first time my headaches have vanished with the pred. I hope they don't return after I'm done.

Title: Re: Hello!
Post by krazylegs on Feb 22^nd, 2008, 4:33pm

Evening all, I'm back again! Thanks for all your kind words! And please, don't say sorry for my headaches, none of you can help it!! Sounds like a lot of you on here have it fr worse than me!

As I stand, I'm now about 8 weeks in to this episode, with the atacks getting more severe in pain rather than better! I had to stop the amytriptolene due to some rather interesting side effects, namely me not feeling like a gave a toss about my job, and wanting to tell all my customers that it was tough shit! Being the assistant manager of an opticians, this wasn't really condusive to me doing a good job, and double up with the fact that by lunchtime every day I felt like I had the mother of all hangovers, I decided I had to knock them on the head! I've now been given gabapentin instead, and I have to build up on them slowly, initially building up over two weeks to 300mg a night, then returning to the quacks to see if I need to increase further or ned to try something different!!

But at least it's been sunny outside! :) ::)

Title: Re: Hello!
Post by coach_bill on Feb 22^nd, 2008, 7:17pm

hey krazylegs same stuff happen to me where they came back after the preds wore off and i did a 2nd pred,taper jumped on topmax, got a oxygen tank, and started taking melatoin at night and it has worked with the night wake-ups, and some imitrex and it seemed to work so far. so talk to your doctor about that opition, it will buy you time for a MRI. and it could break the cycle. there are also other treatments avaible just keep reading as long as your not getting hammered. hang in there champ. coach bill

Title: Re: Hello!
Post by darknight on Feb 25^th, 2008, 12:19pm

Hi Krazylegs,

As you may or may not of read YET there are people on here who have more usefull tips hint and advice, they could put a doctor to shame about the condition and they always tell you to get a propper diagnosis first with help from the info provided!!!
Last week i started Oxygen and i have imigran injectors (thanks to reading up on this site) so far 15mins on the Oxygen at the first signs of an attack stopped it dead and for the past week that been the case, my cycle is stopping but boy did it help!!! Not even used an injector YET!!
Get to the GP and get oxygen no need for drugs and side effects, hopefully it will work for you!! ;)

Title: Re: Hello!
Post by RichardN on Feb 25^th, 2008, 9:36pm

Simon and Coach Bill . . . . SO very glad you both have 02. Now you understand why we urge folks to try as the FIRST-line abortive. Having the ability to kill the beast early-on gives us some control and greatly reduces the fear of the next one.

Krazylegs

Make sure you get your own rig ASAP. I can't use triptans due to some artery blockage and high cholesterol, but like many here, can kill him in minutes if used early-on in the attack.

Be Safe, PFDANs

Richard