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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I am so grateful I found this place
        
(Message started by: Dave_C on Oct 24^th, 2007, 9:56pm)

Title: I am so grateful I found this place
Post by Dave_C on Oct 24^th, 2007, 9:56pm

:DJust a little about myself to begin with. I am 31 yrs old, married I have two children and two step-daughters. I have a wonderful caring and understanding wife who I believe has always took my headaches seriously. Most people just look at me as if I was crazy. I started having headaches about nine years ago. At the time I was abusing drugs and alcohol. I thought that maybe they were causing the pain. Actually I am quite sure at least the alcohol was triggering the cr's. Anyway, after a long bout with trying to stop using and drinking and a couple of trips to jail, I have been clean now from all substances for about three years. But the headaches did not stop. I took the advice of others and seen a doctor for the ffirst time this past May, hard to believe I suffered for that long and would not try to get help, but I finally did and was diagnosed with ch. He prescribed Elavil, it worked but the side effects were affecting my everyday life. Since I had not had any headaches in a while I stopped taking the meds and did not have a headcahe for about three months. until the past three days, they have started right where they left off. Same time every evening, same side of my head, same intensity. So I thought I would look it up on the internet since I now had a name for my condition. And what do you know I found this place.

So far what I have read has been amazing. Although most of the descriptions I have read do seem to be alot more intense than mine, it does however strike fear in my heart. DO THEY ACTUALLY GET WORSE? DO THEY GET WORSE FOR EVERYONE?
Has anyone else tried the Elavil?
Does ice packs on the back of the neck help?
Does everyone hurt on the same side as I do, or does anyone else change sides.? Mine do not.

Title: Re: I am so grateful I found this place
Post by woodeye? on Oct 24^th, 2007, 10:05pm

Dave, welcome and yes you have found the right place. I am also 31 and my headaches just started almost 4 weeks ago. Isn't the internet great for times like these. I can only imagine how scary it must have been 10 - 15 years ago when this information was not so widely available. Sorry to hear that you had to find this place but it is the last place you will have to search for. You will get not only a lot of great feedback here but what a great community this is and the support they offer is awesome.

Good luck to you and your family.

Title: Re: I am so grateful I found this place
Post by Wayne on Oct 25^th, 2007, 2:16am

Hi Dave, welcome!

You've certainly found the right place to gain a lot of insight into this rather shitty condition. First bit of advice is to read as much as you can, prowl through the links on the left and don't be afraid to ask questions, we're all here to help.

To answer some of your questions:
Yes Ice packs do seem to help.
Yes alchohol is definitely a trigger.
Different folks are hit on different sides, most seem to be constant on the side but some do swap and others get hit on both sides.
Clusters do change, sometimes for the better, sometimes for the worse, it seems to be different for everyone.

Second bit of advice - and please dont laugh this off because it sounds too simple - get yourself a pack of Redbull or an equivalent energy drink - it MUST contain caffiene and Taurine and the more the better. The next time you feel a hit coming - at the first sign of it - drink one as fast as you can, chances are it will stop the hit in its tracks. If it does you have an ally.

Third - investigate getting a script for O2, ists first line defence for many folks here, I personally don't use it cos the Redbull works so well for me but so many absolutely swear by it.

Fourth - there are many types of preventatives available, Personally I've never heard of Elavil but I'm sure someone else will be able to shed some light on that one for you. Verapamil, Lithium, Depakote and Topomax seem to be the most widely used, all have advantages and disadvantages- it largely depends on what works for you.

It will likely take some time to find the combo that works for you but chances are you will find it and bring things back to normal.

Good luck!!!!

Title: Re: I am so grateful I found this place
Post by barry_sword on Oct 25^th, 2007, 7:33am

Hi Dave, welcome to your new home. You are with your own now and there is a lot of support and knowledge here.

Let your wife know there is a supporters area that can help her understand more on this also.

Sounds like you have had a couple of battles to fight and congrats on your win.

Barry

Title: Re: I am so grateful I found this place
Post by Bob_Johnson on Oct 25^th, 2007, 7:41am

Elavil, and others in this class of meds, are not first-line treatments (i.e., they don't work!)

This is the best single source of treatments we have. Giving a copy to our doc gives you a tool to discuss your options.

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: I am so grateful I found this place
Post by NJRik on Oct 25^th, 2007, 8:17am

Welcome , Sorry your here but these people seem to be the best types on earth. They know what they speak of so read up and never despair help is always just a ckick away.

Title: Re: I am so grateful I found this place
Post by DennisM1045 on Oct 25^th, 2007, 12:40pm

Hi Dave,

Welcome to the family! I'm so sorry to hear you have CH but you have found the most informed and supportive community of sufferers for any disease I've ever seen. You have a lot of reading ahead of you. Don't hesitate to ask questions. The only dumb question is the one that goes unasked ;;D

Bob gave you a great link. Read through Dr Rozen's info. It will help your Dr get you on the right track.

If your Dr is unwilling to adapt to new ideas, FIND ANOTHER ONE. It is more important that you have Dr that is willing to work with you and learn than to have one who thinks they know CH but don't. Many of us have had to go through several before finding the right one.

On a personal note, I suffered for 12 years before being diagnosed so you are in good company. 12 years ago no one knew what CH was and there were no good resources on the net. I stopped looking until my cycles got bad enough to motivate me again. Don't kick yourself for not finding us sooner. I've only been here since June. I've got to say this place has changed my life.

I use Verapamil as a preventative and I abort my headaches with 100% Oxygen at a high flow rate of 15lpm. If it's early enough in the day I'll throw back an energy drink on top of the O2. If these two steps fail I use an Imitrex injection. This plan has never let me down yet and I owe it to this site.

Good luck and let us know how you make out.

-Dennis-

Title: Re: I am so grateful I found this place
Post by lorac on Oct 27^th, 2007, 9:30pm

hi Dave...Welcome....These people are the greatest, You will find any info you need here..

Hang in there! Lorac