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        Cluster Headache Help and Support >> Getting to Know Ya >> Newbie-Veteran
        
(Message started by: Javier on May 10^th, 2008, 11:27pm)

Title: Newbie-Veteran
Post by Javier on May 10^th, 2008, 11:27pm

I think I posted as a reply to Terrell by mistake so I'm posting again here. Hopefully I did it right this time.

Hello, My name is Javier.

I'm new to message boards but m a 24 year veteran of Clusters. Just started my cycle last night and fear the next 6-8 weeks. My experience has been every other year starting lat Oct,Nov-Dec, Jan. When I did not have a cycle last Nov. I was excited. Well, I'm not excited anymore. Luckily I have 4 tablets of Fioricet left from my last cycle and with a little help from above I might make it thru to monday to see my doctor. I've been thru Lithium, Verap, Imitrex and a few others but I forget their names. Imitrex worked for about 6 years which was 3 cycles and then stopped working last cycle when Fioricet came into my life. For the first 15 years the 2-3 doctors I consulted did not have a clue and would tell me I needed to rest and reduce the stress in my life leaving me to wish I could drill a hole in my head to relieve the pressure. Well, I'm still here so it's safe to say I didn't drill that hole. Anyways, It's nice to find others who know the pain although I'm sorry that you have to go thru this. I'm married with kids and my wife feels absolutely helpless and I hate to let my kids see me this way although my two oldest have seen me at my worst.
Getting late and I don't want to go to sleep tonight because I know I'll be up in 15-30 screaming and banging and praying for mercy. Well, I look forward to talking with some clusterheads and hopefully learn of some treatments I have not tried.

-Javier

Title: Re: Newbie-Veteran
Post by Bob_Johnson on May 11^th, 2008, 8:31am

Given your difficult treatment history, I hope that you are working with a doc having much experience/skill with complex headache. If not start searching:

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org On-line screen to find a physician.

5. http://www.headaches.org/ Look for "Physician Finder" search box. Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
============

The most current, established, therapies listed here.

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)

Title: Re: Newbie-Veteran
Post by Guiseppi on May 11^th, 2008, 10:50am

What Bob said! And don't give up on finding a decent preventative medication to help you through your cycle. Many find what didn't work at one point will work the next cycle. Some have found relief by combining meds, verapamil and lithium etc. Obviously you have to work very closely with a doctor to pull this off, all the more reason to find a qualified doc who knows something about CH.

For now, get down to your local health food/vitamin store and get some melatonin. Many can avoid the night time terrors by taking it 30 minutes before bed time. The people who have had success with it say they take 9-12 mg doses just before bed time.

Then grab a six pack of energy drinks, Rock Star, Red Bull, any contaiing the combo of caffeine and taurine. Many can abort or at least reduce an attack by slamming one of those at the onset of an attack.

Do you have oxygen yet? 30 years of dancing with the beast it's still my first and most effective abortive medication.

Glad you ound us. I really hope we can help you.

Guiseppi

Title: Re: Newbie-Veteran
Post by Javier on May 12^th, 2008, 12:05pm

Thanks for the advice. I was in urgent care for about 2 hours yesterday trying to get some meds because I had to use the last ones I had Saturday night. I got them and I'm doing OK this morning.

I'll be looking for a new doctor today and will be asking for different treatment like oxygen. I also purchased some red bull and will be giving that a try today. It seems to me by what I'm reading, stimulants might be key to preventing clusters. Good to know.

I have not seeing any mention of Fioricet on this website. Maybe I haven't browsed around enough to find it.
Anyways, if you haven't tried it you should. It is working for me although it takes about an hour to take affect. It's used in combination with Ibuprofen. Thanks for your replies. Talk to you soon.

-Javier

Title: Re: Newbie-Veteran
Post by mezza on May 12^th, 2008, 7:07pm

Hopefully someone will be along soon to talk about fiorecet. I thought I remembered posts on here saying that fiorcet was addictive or something? not sure - but someone will correct me or post more i am sure

An hour to take effect is too long for me to use as an abortive - there are much quicker acting abortives out there like O2, imitrex, zomig - but you'll want to talk to your doc about all that

Definitely research this site more regarding medications that are indicated to assist CH.

Good luck to you- kelly

Title: Re: Newbie-Veteran
Post by Batch on May 12^th, 2008, 7:21pm

Javier,

Bob Johnson and Guiseppi have given you some sound words of advice. I'll second Guiseppi's words on oxygen therapy. It is by far the most effective, lease invasive, and least expensive abortive for the most CH'ers, and it if used properly, oxygen therapy can abort the pain of a cluster headache attack in less than 10 to 15 minutes depending on the flow rate and Kip-level of pain. The higher the pain the longer it takes to abort the attack... so start oxygen therapy early.

When you see your doctor/neurologist ask for oxygen therapy up front. Most neurologists will put you off and not give you an Rx for it until they get an MRI or CT Scan. That's reasonable if they are seeing you for the frirst time and question the diagnosis as they do need to look for another cause.

If you get a green light for oxygen therapy make sure your prescription reads like the following:

"Oxygen Therapy with a non-rebreather mask at 12 to 15 liters/minute flow rate AS REQUIRED for cluster headaches." This prescription will cover all the bases with your insurance company and the medical home delivery folks that drop off your oxygen cylinders, mask, and regulator (good for 15 liters/minute.

One of the best strategies for treating cluster headaches comes from the Michigan Headache & Neurological Institute (MHNI) Ann Arbor, MI. The neurologists there have hundreds of cluster headache patients from all over the world coming to see then so have far more experience treating people with our disorder than most.

http://www.mhni.com/clusterheadaches.aspx#treating

If your doctor/neurologist gives you a regiment of treatments like shown in the link above... You're in good hands. We're all wired differently so there is no single course of treatments that works for all of us all the time. In fact, what works for you this year may not work next year... The beast is expert at morphing.

Take care,

V/R, Batch

Title: Re: Newbie-Veteran
Post by Javier on May 14^th, 2008, 7:31pm

Thanks for all the advice. I will be asking for the Oxygen on Friday when I see my new Doctor.

As for the Fioricet. It's not working anymore just like the Imitrex stopped working 2 cycles back.

Life sucks, The Beast SUCKS!!!! >:(

There is a lot of advice on treatments but does anyone have any ideas/theories on what the root cause of our pain is?

Title: Re: Newbie-Veteran
Post by DennisM1045 on May 16^th, 2008, 12:36pm

on 05/14/08 at 19:31:54, Javier wrote:

Life sucks, The Beast SUCKS!!!! >:(

You're wrong.

Life is a wonderful gift that needs to be enjoyed to the fullest in between the hits.

It's just the beast the sucks.

-Dennis-

Title: Re: Newbie-Veteran
Post by debOUCH on May 16^th, 2008, 10:12pm

yes, CH does suck.....but as dennis said "each day is a gift"..........................i can honestly say all my life i have lived each day as if it were my last.......................those who know me do not "get" how i can always be so "up"..........tho new to the "beast", not new to life, and life is always throwing us curve balls.............keep the faith, javier............................................the "strong will survive"..................................and i truly believe only the strong ones get CH!!!! m thoughts on this another time..........!!!i will sign off with one of my fave lines.............................CARPE DIEM............................
hugs going out to you.
deb
[smiley=hug.gif]

Title: Re: Newbie-Veteran
Post by Javier on May 20^th, 2008, 2:09am

Dennis/Deb,

Thank you for your kind words. I was not having a good day as you can tell. You both are so right. Everyday I look at my 4 kids and thank GOD for blessing me with them and my beautiful wife of 17 years.

But this beast has been in my life for 24 years and I forget how lucky I really am.

God bless you both.

Yesterday I started the Med routine again. Lithium,Verap and Prednisone. Also, an abortive named Treximet that I had to stop because of severe side effects. I will be receiving O2 tomorrow so hopefully I'll be able to fight this thing effectively.

Thanks again and the support here is GREAT!!

-Javier