Hi everyone.
I feel good that I have come across this board. I was looking at the Wikpedia thing the other day, and I was quite amazed that it was me being described!
My first CHs were about 18 years ago. They appear approximately every two or three years, and last for about six weeks, with maybe three or four attacks a day - or rather night, since that's always been the prime time.
I'm about 4 weeks into a cycle just now, and have been seeing a doctor, who has arranged a visit to a neurologist.
The doctor was pretty OK, being new to my condition, and has been precribing me Imigran subcutaneous injections and Zomig tablets as abortive medication.
Her first attempt at preventative medication didn't help at all - it was Pizotifen. After that she prescribed Verapamil, and I took two the first day. She called the next day and said that after having talked to the the neuro she wanted to put me on steroids instead of Verapamil, so I left the Verapamil and went on to the steroids.
Things were great for a couple of days, but then they came back, and I had a really bad day when I was out of abortive medication.
Guess most people know about the fresh air, hot showers, coffee, gallons of cold water etc.
Anyway, yesterday, I decided to go back on the Verapamil, since I still had them.
That's two days now, and I'm still getting "twinges" and dull attacks, but nothing severe. I really feel that the Verapamil is working, and will check this out with the doctor when I see her again on Wednesday.
Like everyone else, I guess I just get down when they come round again, and am pretty nervous about going to bed.
Anyway - thanks for having me - it's nice to know that I'm not the only one.

Hello Bluebear

Welcome to the board , you are not alone.
There's loads of people on here to ask questions of and years of experience (not me though as I'm in year 1 and there for know nothing) but I'm shore some one will be a long soon to tell you all about O2 etc.

anyway Just wanted to say HI

Nigel

Welcome to a place where you are not alone and will receive a wealth of info to help educate those ignorant doctors and those who may say to you "go lay down and you will feel better"

The steroids the dr recommended was probably a common trasititonal med called Prednisone, to be tapered down from high dosage to low dosage used in conjunction with a preventative med such as Verapamil.   

The Verap takes a couple weeks or longer to get into your bloodstream to reduce the frequency of attacks and intensity of each attack, so the Pred is prescribed to work in the meantime giving the patent some relief. 

The abortive med such as Imitrex is great; injections are best, nasal spray ok, pills are worthless.  The best abortive is pure oxygen used at a high flow rate of at least 15 liters per minute, hyperventilating in/out of a NON-rebreather mask. 

Plenty of great info here from the past 12 years contributed by over 7,000 expert patients.  Look around this site, print stuff off to create your own library and share with doctor, loved ones, etc.  Ask questions and keep us posted on your progress.  Welcome Aboard and Good Luck

Hi Las Vegas & Nigel
Thanks for the support.
Yes - the steroids were Prednisone, and it was 10 a day to start with going down to two a day which I am now on.
I've had time to browse around the site, and oxygen seems to be favoured by a lot of people. I'll have a talk to the doctor on Wednesday.
I have this vision of me walking in to work in a wet suit with aqualung, mask & flippers - but feeling just great!
Anyway, the Imigran is great for me - it really does a fast job of stopping the attacks in their tracks. Of course the recommended dosage is a maximum of 2 in 24 hours. I'm a pretty big guy, and I've allowed myself 3 a day if necessary - but only as a last resort. But I guess we all know about last resorts.
I do think that Imigran occasionally gives me a nasty type of "hangover". It seems to be a bit like an attack coming on, but more "heavy" and "blunt." I've learned to try to ride this out, and a shower, coffee and 2 or 3 ibiprofens inevitably sort this out.
The Zomig, I use sometimes before I go to bed, and it usually gives me four or five hours sleep without a nuclear war going off in my head. Once again, I'm sure you all know about "just wanting a nice normal sleep." The other use for them is to take one when I feel an attack coming on during the day, and this usually stops things happening.
This brings me on to sleep. My experience is that when I'm well into a cycle, I'm starting to suffer from lack of sleep, and the attacks can be more severe. Has anyone had any experience of taking a sleeping tablet just to give them agood 12 hour sleep??
Jeez - I sound like a junkie! Thinking about this, I recall times when medical professionals have thought that's exactly what I was. The look on thier face that they "knew" I was just looking for a fix of something. My CLs and I have done a lot of travelling, and in some countries I've had no help whatsoever!
I'm really glad I've found this site, and I'm going to make a conscientious effort to keep in touch - even afte this present cycle goes. I'm grateful for the "I'm here for you" approach, and would like to say that "I'm here for you guys too!"
One great minimal thing I've now got is that - from now on - I'm going to say it's "Cluster Headaches" when I explain to people, and not "migraines." I'm a 100% CL sufferer (or clusterhead as you guys say) and I'm not going into the business of pandering to people's ignorance any more. If anyone wants an explantion, I'll point them to Simon Bower's fine letter, or some of the other resources on the Web.
This cycle is the turning point, and I now realise that this is something that I will have to live with for the rest of my life. My future mission, then, is knowing how to deal with it, and my take is that the next time it crops up, I should go "preventative" as quickly as possible. This combination of Prednisone and Verapamil seems to be working, and I have the feeling that I'm a week or two away from the end of this cycle. If I'm right, then I'll go for that next time - and as soon as I can.
Once again - thanks for being here.

welcome.

Coach Bill (clusterhead for life).

An energy drink such as red bull can help reduce high kip attacks and even abort low ones  doesn't matter what make as long as it has caffeine and taurin in it .

Just thought it might help.

Nigel

Headache Boy uk wrote on Apr 25^th, 2010 at 9:06am:

An energy drink such as red bull can help reduce high kip attacks and even abort low ones  doesn't matter what make as long as it has caffeine and taurin in it . Just thought it might help. Nigel

However there are some that don't have enough. It should contain at least as much caffeine as a cup of coffee (around 80mg) and about 1000mg of taurine.

For example, Amp brand energy drink has the caffeine, but not near enough taurine. I find it to be unhelpful.

Bluebear, your attitude is great!  As for taking 3 Imigran (Imitrex) in a 24 hr period, you can avoid the health risk and avoid the hangover feeling by using the "Imitrex Tip" seen on the left side of your screen.  Essentially it is utilizing the 6 mg dose into three 2 mg doses.  More bang for your buck, without the health risks and hangover.  You inquired of a sleeping tablet to get a good night sleep, many here use 9 mg of Melatonin before bed, reporting it helps get a better night rest compared to not taking it.  Oxygen is the best abortive and the safest and the least expensive.  Highly recommend you read the Oxygen Info tab on the lest side of yor screen and print to share with your doctor.  Good luck

Quote:

However there are some that don't have enough. It should contain at least as much caffeine as a cup of coffee (around 80mg) and about 1000mg of taurine. For example, Amp brand energy drink has the caffeine, but not near enough taurine. I find it to be unhelpful.

Thanks Brew , I'm often posting about energy drinks cos that's about all I know from personal experience , well that and what a life saver Imitrex shots are , so I will bare that info in mind next time.

Nigel

What Las Vegas said about the imitrex tip!

This is very important, and can greatly improve your CH experience starting....immediately.

Imitrex Tip: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I'm a little worried about your prednisone taper........as Vegas said, prednisone is a transitional prevent. Will block 100% of attacks for many, but it is usually used while you ramp up on your prevent...in this case verapamil, which generally takes about 10 days. In my case, if I go on prednisone with nothing else, when I come off of it, I get absolutley creamed. So just be ready for a potential change in your cycle when you're done with the pred. Then get oxygen! ;)

Joe

Hey Everyone
Thanks a lot for all these great tips.
I've done the Imigran one (Imitrex) and it works a treat. I've now got this wonderful feeling of looking at 4 doses and knowing that there are 12 there!
I've come to the end of of my prednisone today - but I've got quite a few left. Guiseppe - many thanks for the concern and the advice. Since I'm only - what - three days into the Verapamil, I think I'll follow your advice and keep taking two tabs of Prednisone daily for another week, along with the Verapamil.
I've got the doctors on Wednesday, so we'll see what happens there. I'll have a talk to her about O2 - I can only try. My second line of attack is the neurologist, but I'm still waiting for my appointment. Perhaps he will be more interested in me, and I intend to discuss quite a few things I've learned on here.
Things weren't so bad last night - I feel that the attacks were "blunter" and "heavier" and I didn't wake up with my eyes streaming. Since this is now my fifth week, and the doc first of all put me on a course of Pizotofen, maybe, just maybe, I'm coming out of it.
Coming out of it or not, I've sussed from this board that I'm going to have to be prepared to fight this Beast, and to be ready with a game plan next time round.
I'd like to also say thanks to Headache Boy, Brew et al for the tips about the energy drinks. My expresso machine is now working full out since I got the info on caffeine from this board, and I've been keeping topped up at work with a couple of Red Bulls.
You guys all take care.
Catch you soon.

Be sure you taper off the prednisone when the time comes. My recommendation would be to drop 5mg per day until you're done. If you just stop, bad things can happen with your adrenal glands, and they can affect just about every other organ in your body.