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        Cluster Headache Help and Support >> Cluster Headache Specific >> 1st time poster
        
(Message started by: BaseballCoach on Dec 11^th, 2007, 8:59am)

Title: 1st time poster
Post by BaseballCoach on Dec 11^th, 2007, 8:59am

Hi, everyone...

I'm 27/m from Lousiana. Was diagnosed about 5 years ago...Been on and off meds...The problem is, I used to be a heavy drinker and was scared to take them...I've now been sober for 8 months and have decided to get back on my meds full strength....Went to the doc yesterday, he gave me topomax, verelan, depakote, and prednisone....I take imitrex injections which get rid of the pain, but the problem is I have 20-25 headaches a month and usually run out....Any helpful info is appreciated...

Title: Re: 1st time poster
Post by nani on Dec 11^th, 2007, 9:05am

Hi Coach.
Welcome and congrats on your sobriety.

<=============
Look over on the left at the oxygen info link. It works really well for many of us when properly administered.

Once your other meds kick in (I do wonder if Topamax and depakote is overkill) they may help prevent a lot of attacks. Good luck and keep us posted.
pain free wishes, nani

Title: Re: 1st time poster
Post by BaseballCoach on Dec 11^th, 2007, 10:22am

Thanks Nani!

Have tried Oxygen before....noticed it worked when I administered right away, but didn't if the pain got too bad..I'm not home a whole lot so it was tough for me to use it often....I gave up on it after about 2 months....Are you saying that Topomax and Depokote have basically the same purpose and I should look into taking just one or the other? Thanks

Title: Re: 1st time poster
Post by Guiseppi on Dec 11^th, 2007, 10:55am

Both are used as a preventative, while it's not unusual for people to use a combo of meds for their preventative medications, those are both high horsepower medications. Oxygen can be fairly portable, I have e-tanks in my cars and then little baby tanks I keep under my desk at work. 30 years fighting these things and oxygen is still my front line abort.

The good news is you souind like you lucked into a doctor who knows something about CH, that's a blessing in itself! Welcome to the boards, may your cycle be a short one!

Guiseppi

Title: Re: 1st time poster
Post by Bob_Johnson on Dec 11^th, 2007, 11:11am

Because of the number of attacks/month, a preventive med is essential. Your doc can intervene with your insurance company in hopes of getting approval for more Imitrex but, should that fail, ask him for a trial of olanzapine (see two articles below). This med works quickly for many of us to abort an attack and, on a per dose basis, the cost is less than Imitrex--even if you have to pay out of pocket.

IF your doc is not experienced in treating headache, you might consider a change, if that's an option. We have had too much experience with docs who have insufficient skill to work with cluster. (If you want to explore, get back for leads on finding a good doc.)
-------
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: 1st time poster
Post by sandie99 on Dec 11^th, 2007, 11:34am

Warm welcome to the board! :)

Lots of PF days,
Sanna

Title: Re: 1st time poster
Post by BaseballCoach on Dec 11^th, 2007, 12:06pm

Thanks for all the replies....I really think my doc has dealt with CH frequently. I've done alot of research and he's trying everything that is out there pretty much....I just have to stick to the preventatives this time and see what happens...I really thought after I quit drinking they would get better but they've gotten worse....

I will continue to keep everyone updated....Already had two today :(.....One at 1 a.m. and one at 10 a.m. just a few minutes ago...The imitrex is truly a life saver I'm just worried about the long term side effects and availabilty should I need them more....

Again thanks, and glad to be here.

Oh one more question...DOes anyone know any foods that I should avoid most certainly? I've heard of dairy products being a possible cause and caffeine......just haven't heard for sure...I'm willing to give up whatever I need to.

Title: Re: 1st time poster
Post by vietvet2tours on Dec 11^th, 2007, 1:47pm

on 12/11/07 at 12:06:27, BaseballCoach wrote:

It's your hypothalumus that causes your head to explode.Huff that oxygen.

Potter

Title: Re: 1st time poster
Post by thebbz on Dec 11^th, 2007, 2:20pm

The only food I stay away from is alcohol. ;)
thebb

Title: Re: 1st time poster
Post by Bob_Johnson on Dec 11^th, 2007, 2:49pm

Food and such triggers were big topics several years ago, starting with the migraine folks--but, from what I see in the medical liteature, no one seriously sees food as an issue now.

Title: Re: 1st time poster
Post by Guiseppi on Dec 11^th, 2007, 11:07pm

Our triggers don't tend to be foods with the exception of alcohol. (Yes i feel alcohol is one of the critical food groups.......off cycle! ;;D)

My triggers when on cycle are alcohol...a biggie.....sustained stress, extreme hunger and sleep deprivation or radical changes in sleep cycles. Off cycle nothng touches me!

Guiseppi

Title: Re: 1st time poster
Post by BarbaraD on Dec 12^th, 2007, 6:41am

I'm chronic so ....

But alcohol is a definite trigger for most when in cycle (beer especially and red wine). Food (sometimes MSG) has not been shown to be a trigger for "most".

Everyone is different so you may have triggers for you that no one else experiences - we're all different (remember that). What works for one may not necessarily work for another.

Red Bull (energy drink) has worked for a lot of us (drank at the first sign of CH) to abort an attack. O2 is a definite for most. Melatonin at night helps a lot of us get the rest we need and keeps away nighttime hits (9-15mg about 45 mintes before bedtime).

I've been on topamax since 99 and swear by it. I'm on 100mg at this time but have been up higher during "high cycles". Lower doses just don't work for me (or anyone else I've heard about).

I take Cafergot to abort instead of imitrex. It's cheaper and I think it works better. I take it in pill form most of the time but it comes in suppositories (be sure to request the cafergot PB or you'll throw up your toenails). I also take phenergan 25mg with it to stop the naseau it causes. But it lasts about 8 hours. The imitrex has been known to cause rebounds. Haven't heard that with the cafergot. Never had trouble with insurance on it either.

Coffee is one of my mainstays -- I drink a LOT of it (as I said - I'm chronic). I wake up with shadows and the first thing I do is grab a cup of java. It's a vaso-constrictor also (as is imitrex and cafergot), so that and O2 are my first line of defense. (Try drinking a cup of coffee while sucking on O2 - not easy but it can be done! ;;D)

My best advice is to READ READ READ this board. There are thousands of pages of advice that is really good. What's worked and what hasn't worked (and the banana peels around the forehead definitely do NOT work - trust me on that one!). Then go to your neuro and keep trying things until you hit on what works for YOU.

Hugs BD

Title: Re: 1st time poster
Post by clusterwife on Dec 13^th, 2007, 6:56pm

My hubby has good results with 02 too. Welcome, and like Barbara wrote, read, read, and post too! Leah.

Title: Re: 1st time poster
Post by Chappy on Dec 15^th, 2007, 1:36pm

Quick question for Barb (or any other chronics) - I'm chronic and daily, only recently diagnosed. The first thing docs at Mayo told me was 0 alcohol and 0 caffeine, so I stopped both. Topomax 200mg has lowered the 2-4 daily hits (1-2 hours each) to kip level 3-5s, and my nightly 3-5 hour headache rarely gets past a kip 7.

Red bulls, rock stars, etc. really used to help me during the day, and quitting caffeine entirely made exactly 0 difference to my headaches or my sleep schedule. From reading the boards, I'm about ready to go out and stock up.

I also never noticed alcohol as a "trigger" in any way - a couple of beers actually kills minor shadows for me, but my wife read somewhere that alcohol would increase the frequency of chronic CH. So I know for sure that a beer or two doesn't have any immediate effect, but does anyone feel it has any "anti-preventive" effect so to speak?

I love my micro brews, love my coffee, and being in pain all the time I feel like I've given up enough of life's pleasures without giving those up too.

I was only "finally" diagnosed a week ago at Mayo after 5 months of neuro visits, MRIs, etc., and I'm getting mixed messages from doctors, "articles" on health sites, and what I see in the forums here about caffeine and alchohol. I'm happy to give anything up that might help, but wondered what wisdom anyone had to offer.

Title: Re: 1st time poster
Post by nani on Dec 15^th, 2007, 2:02pm

Hi chappy.
Caffeine is a vasoconstrictor, so it's actually good for us while having an attack.
Alcohol tends to be a trigger for episodics more than chronics. I used to drink, but it does sometimes trigger attacks, so I just quit. It's not worth it to me.
I am a chronic, but most of the time I am able to manage this quite well with non-standard treatments.
pf wishes, nani

Title: Re: 1st time poster
Post by ctygrl1965 on Dec 17^th, 2007, 3:24pm

Most insurance companies don't seperate clusters and migraines so the base line treatment allowances are for migraines. My husband was only allowed 6 imitrex injections a month. He would go through that in one day! You will have to get your doctor to write a letter to the insurance company stating the need for more than the normal allowance. The insurance company will put it up for "review." My suggestion to you is to stock pile your medications throughout the year when your not in your cycle.

Title: Re: 1st time poster
Post by outofcommission on Jan 15^th, 2008, 7:30pm

haven't been to the doctor this time around. i don't really like to take drugs or waste money on unknowing doctors. (don't have insurance) tylonol works good as a pm for me. i have found that o2 and cold ice water are good as an abortive measure. from a kip7 to a kip9 i usually have to ride those out. i usually don't get hit when i am working outside. saturday i was working outside had some good tunes playing on my computer out in the garage and wanted a beer really bad.(one of my triggers) i thought well no shadows today maybe i can have one if i drink it slow. so i nursed it for about an hour and drank about 3/4 of it and my wife came out bitching about something. i tried to ignore her but she was pretty persistent. eventually i got pissed off and that lead to a kip 6 ch and from there the rest of my day was screwed.

Title: Re: 1st time poster
Post by Turts on Jan 15^th, 2008, 8:17pm

sorry to hear your circumstance,

i have founs success with caffeine, taurine and O2. along with verapmil as a prevent.

as for the imitrex injections, never done it, however NOTE The IMITREX TIP on the left. it may help prolong the stockpile of injections that you have

Good luck and Good Vibrations

Turts

Title: Re: 1st time poster
Post by Turts on Jan 15^th, 2008, 8:20pm