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        Cluster Headache Help and Support >> Getting to Know Ya >> Im new here and Love it!
        
(Message started by: Bstrong on Apr 13^th, 2008, 7:52pm)

Title: Im new here and Love it!
Post by Bstrong on Apr 13^th, 2008, 7:52pm

Hey everyone, My name is Brad. Ive suffered ch for about 15 yrs. Im in a cycle now going on 6 weeks. This time around seems to be worse then previous ones. When 1st diagnosed, they said migraines, and put me on inderal for preventitive and butalbital for pain. Well Im still today on those same meds, because thats all Ive known. But after reading on here O2 seems to be the abortive of choice. I recently had another MRI just to be sure, but will be talking to my dr about O2 my next visit. I appreciate everyones stories, and how everyone comes together to help each other. Because I know all to well how horrible these are. The people Im around most feel for me, but just don't know the whole gig! Thank you for having a place for us to go to!

Title: Re: Im new here and Love it!
Post by debOUCH on Apr 13^th, 2008, 7:58pm

welcome........................lov your screen name!!! hope you are soon done with da beast! in no time, all the pros on here will be along to offer u all the insight/help/advice you need..................they are all wonderful sources of information & comfort!
deb
[smiley=hug.gif]

Title: Re: Im new here and Love it!
Post by mc_ashes on Apr 13^th, 2008, 10:19pm

Welcome Brad, oxygen has indeed become my new abortative of choice (it use to be Maxalt). I just got it 5 days ago after nearly a month since first getting an O2 prescription. Make sure your Dr. includes specification of a non-rebreather mask and a high flow rate 15 lpm for relief of Cluster Headaches. I'm not taking any sort of preventative now as I keep hoping I'm about finished with the present cycle (10.5 weeks and counting). Like you, I believe this has been the worst and longest cycle I've ever had.

Some knowledgeable folks will be along who can/will inform you about the various recommended medications for treatment. My Dr and I are still trying to figure out what works best for me, so I'm not much help, but wanted to say welcome aboard anyway.

Hang in there and read all you can. I've found many new wepons here for battling the beast and you will too. If you've got questions ask them, there's a lot of experience here and because you're part of the family now you've get access to that experience. What a great concept.

Mark

Title: Re: Im new here and Love it!
Post by Guiseppi on Apr 13^th, 2008, 10:41pm

Love your screen name, the oxygen advice will begin to sound like a recording! Pretty amazing stuff for many of us. You're episodic, so am I. We're lucky in that we get the breaks lasting from several months to several years, the chronics never get a break!

30 years of battling these damned things, I've found the best approach to be a 2 pronged approach.

1: First off, you need a good preventative routine. This is a medication you take to reduce the frequency and the intensity of your attacks. I use lithium, at 1200 mg a day. I'm in law enforcement so I'm somewhat limited on what I can take and still work. At 1200 mg a day it blocks 80-90 percent of my attacks. Other popular prevents are verapamil, topomax. There are many for you to read up on in the meds section and discuss with your doctor.

2: Then you need an effective abortive routine. A headache is breaking through your prevent meds, what now? Oxygen should be your first line abortive. If your doc argues, change docs. It's just not worth the effort to argue if they don't even know that much about CH. 02 aborts most of my headahces, oral cafergot and the occasional imitrex injectable get most of the remainders.

I was prescribed the butalbitol about 28 years ago. It was ther first medication that actually seemed to work on the CH pain mechanism. The down side is it's a fairly addictive medication and I think you'll find some far more effective aborts to try on the med board.

So glad you found us, now I hope we can help you!

Guiseppi

Title: Re: Im new here and Love it!
Post by Batch on Apr 14^th, 2008, 8:41am

Hey Brad,

Welcome aboard. You're on the right track going for oxygen therapy as your primary abortive. The sooner you get a prescription the better. The higher the flow rate the better too!

A good Rx for oxygen therapy should read something like the following:

"Oxygen therapy with a non-rebreather mask at 12 to 15 liters/minute flow rate AS NEEDED for cluster headache attacks."

Take care,

V/R, Batch

Title: Re: Im new here and Love it!
Post by Bob_Johnson on Apr 14^th, 2008, 9:13am

Hope you have a good headache doc with whom you explore your treatment options. If you have not read these documents, suggest you print them out and consider the various options you have.

Oxygen has become very popular and is often quite effective but whether it's appropriate for you is, in part, a function of your lifestyle. That is, if your attacks are mostly at work then having the equipment may not be possible or practical. There are several effective abortives which work quickly and fit in your pocket.

Title: Re: Im new here and Love it!
Post by darknight on Apr 14^th, 2008, 10:04am

O2 O2 O2 O2!!!

Without these guys and the knowledge they posess id still be dancing whilst taking a large and ineffective amount of paracetamol, maxalt, ibuprofen etc!

Now i take no tablets, if i feel even the slightest twinge im on my 02 for 15-20 mins at the rate everyone is told to (15 blah blah) and the beast is halted, ive only started 02 since feb? and havent had chance to use my imigran/imitix injector (back up incase 02 doesnt work) as the Oxygen stops it dead!!

I hope you give the 02 a go and that it works but dont worry if it doesnt with these pros around they can guide us amatuers to something that may help!! ;)

PFD to all

Title: Re: Im new here and Love it!
Post by RichardN on Apr 14^th, 2008, 12:44pm

Hi Brad & Welcome to Clusterville

Another vote for 02 here. I can't take Imitrex (some artery blockage and high cholesterol), so 02 is my only abortive . . . I go nowhere without it.

I'm a (chronic) "head trauma" CHer. I nailed my noggin 1/01 . . . headaches started . . . CTs, MRI, mis-diagnosis, non-working meds (Vioxx & Atenelol). By the time my wife found this site for me, was having 6-8 attacks daily, sometimes 3-5 at night, Kip 5-9, most 20-45 min and the occasional 1 1/2 - 2 hr horrors . . . I was a basket-case . . . this site and these guys gave me my life back.

After coming here, I copied info, took to the doc and finally started to get some relief. It was Verapamil that worked for me as preventative, and wonderful, WONDERFUL 02 as abortive. Having some control over the beast removes a great deal of the very real FEAR of these things.

Read, read, read . . . and ask any questions you might have. The answers/info/caring/sharing you will get here come from folks who truly know your pain.

Be Safe, PFDANs

Richard

Title: Re: Im new here and Love it!
Post by Terrell on Apr 14^th, 2008, 7:15pm

Welcome Brad. As you can see, there is a lot of great advice and information on this site and from those who post. I am winding down from my first cycle in five years. Fortunately for me, my preventative verapamil has worked very well for me. It didn't take long for it to kick in but as you have read each one us has to find that right combination to effectively beat the beast. I have learned so much since I have joined the site and everyone has been great in dispensing info. The only advice I can give is ask and read and make sure your DR. is onboard. I hope your cycle winds down soon.

Title: Re: Im new here and Love it!
Post by CostaRicaKris on Apr 14^th, 2008, 8:46pm

on 04/13/08 at 19:52:20, Bstrong wrote:

Im in a cycle now going on 6 weeks.

Hey - Me too!

Welcome Brad! I'm another fan of O2. Especially after years of Doctors not knowing what to do with me and giving me everything from morphine to methadone - which of course didn't help and made me feel so drugged out. Now I can manage these sooo much better with a preventative (Topomax) then I have O2 and Rockstar as my first line of defense. If the beast still breaks through - Imitrex. And of course, all the great people and info on this board help too ;-)

~Kris

Title: Re: Im new here and Love it!
Post by stevec on Apr 14^th, 2008, 11:56pm

Hey, Brad,

Welcome! I'm an episodic CH person who also happens to be an MD. Still, that didn't keep me from being misdiagnosed for about 8 yrs. I never heard of cluster headaches throughout all of medical school! Mine only come for a couple of months every year and a half. O2 is my abortive method of choice. Topomax is my preventative during the episode. A small subcutaneous Imitrex injection works pretty well for me to kill the occasional beast when necessary. We are here to help you!

Steve

Title: Re: Im new here and Love it!
Post by Bstrong on Apr 15^th, 2008, 1:21am

WoW!!!!!!! Didn't think Id get the responses I have. With the heartfelt concern from all. You all are great. I will be posting more later but will post on appropriate message boards. I thank you all and hope to talk to you all again soon.

Title: Re: Im new here and Love it!
Post by BarbaraD on Apr 29^th, 2008, 8:41am

Welcome Brad

Melatonin at night (9-15mg) helps get you thru the REM sleep and kills the night hits for a lot of us.

I echo the O2 (I'm chronic) and topamax. Keeps me sane.

Sorry you had to find us, but you're in the right place. Pull up a chair and read read read. This site is THE Clusterheadache site and has more info on CH than most medical schools. We KNOW how you feel and understand, so ask questions, vent -- we're family here.. Welcome to Clusterville....

Hugs BD

Title: Re: Im new here and Love it!
Post by FK5 on Apr 29^th, 2008, 2:08pm

Been on the board a week or so.

Brad, you have found home in so many ways. I think the best part of this is that everyone understands.

This year being my 4th, I finally went on prevent meds and abortives if needed. Into this period going on 5 weeks I think. The Verapamil is working and I have used O2 nightly for about 20 minutes when I get a kip 4. That's as high has it's been thus far. But for sure, the 02 knocks it out! (for me)

On the same note the past three years seem to have been much shorter cycles but always ending in kip 10 at the emergency room. I don't know if meds actually prolong things, just hoping I don't see anything above a kip 4 to a kip10 during my new med reg.

For this moment in time, o2 is my life saver!

Title: Re: Im new here and Love it!
Post by Charlie on Apr 29^th, 2008, 9:37pm

Welcome aboard Brad but I'm sorry I have to make your acquaintance because of this horror. You'll find a ton of good ideas here. I know your feeling about connecting with so many fellow sufferers.........people you do not have to waste time trying to convince that your headache is unlike anything they can imagine. They know exactly what you mean.

Here is something that I used very successfully and I hope you give it a try:

Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie