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(Message started by: eyhavhedaches on Feb 9^th, 2004, 11:23pm)

Title: New Member
Post by eyhavhedaches on Feb 9^th, 2004, 11:23pm

Hello everyone,
Brand new here, found my way through about.com. So here is the low down on me! Started the really bad headaches when I was about 13, debilatating headaches and very violent episodes. Missed lots of school and had no idea what was happening to me. My mother was the only string holding my fabric together. She would pull the shades and put cold compresses to my forehead time after time, until she could take it no more. Then, came the doctors. Allergie specialists poking me with 20 or more needles to test me for differant allergic reactions, no luck. Dieticians, shrink , eye doctor and so on, no luck. Deppresion kicked in and being a young boy and being affected by something so horrible and so painfull behavioral problems kicked in not long after this whole mess began. Made it through school, it was a miracle. My early twenties brought me more pain although it had never ceased it intensified by three times in my early twenties, thus came more docters and increased emergency visits for that sometimes not so quick fix demoral. Two spinal taps, 3 cat scans and all kinds of other tests that did absoulutly nothing to explain why I was going through what I was going through. I am now 33 years old and have added to my arsanal of useless information 3 MRI's, I have finally been diagnosed just one short year ago with CLUSTER HEADACHE SYNDROME. I live in a small town close to Bangor Maine and I have found no huge Pool of knowledge
about CHS from most of the docters here. Most of what I have learned has been over the Internet. I am taking Depakote and verapimil and use Imitrex Injections. The verapimil and depakote has seemed to not show much significance in preventing my headaches so thank god for the Imitrex Injections or I would probably finally after all these years just say, screw it. I have considered suicide because of the intense pain but than I think of those who love me and what I would do to them by being so selfish as to cure my pain by Inflicting it onto Them. Anyways, just beginning to end my cycle so I had should be having a few months of pain free days well except for the breakthroughs. Anybody with any advice on meds or what you do to help with the pain would be kindly appreciated to share. Thanks, Adam

Title: Re: New Member
Post by t_h_b on Feb 9^th, 2004, 11:42pm

Adam, this is probably the largest pool of knowledge about CH around. Glad you finally got diagnosed. A lot of people here had CH for years before diagnosis.

Are you taking enough verapamil? You probably need at least 480mg a day, you can probably take twice that with your MD's okay. Some people think regular release is better than sustained release. There are other meds you can take with the verapamil--lithium, prednisone, ergotamine.

Also oxygen is one of the best abortives, along with the Imitrex, so you should try to a prescription for some. Again, see the link to the left, labelled "oxygen info".

A lot of us have considered suicide but it is likely not the best option. There really is hope. Now that you know what you have you can fight it. Sounds like you're off to a good start, and there are lots of different medications to fight this thing.

Melatonin has gotten my CH under control. (I take 0.5mg at bedtime, some people take 20 times that. You could start small and work your way up until you hit a dose that helps.)

Many people have found psilocybin cures their headaches.

You should talk to your doctor before taking any prescription or non-prescription medicationss or before altering the doses of your prescribed medications.

Learn all you can; you can't rely on most doctors, as you've found out. You might also see CHhelp.com and there is a decent book called "Cluster Headache & Related Conditions" edited by Olesen and Goadsby that you can get for under $15 on Amazon or Ebay. You should also join OUCH to help win the war.

You've also got a bunch of people here who understand exactly what you have to deal with without you having to explain anything. Your story is not atypical.

Welcome aboard.

P.S., eyhavhedaches 2!

Title: Re: New Member
Post by cootie on Feb 10^th, 2004, 12:08am

Hey Adam....yer in the big pool now so no more wading......you can finally learn to swim in knowledge ! Pam that can only dog paddle around

Title: Re: New Member
Post by BarbaraD on Feb 10^th, 2004, 5:33am

Welcome Adam. Pull up a chair and sit a spell. This is the place to be if you have CH. WE do KNOW how you feel.

And yes, we've all thought of suicide, but after finding this site, you'll find you do have a support group who have been there (and are still there)

Go to the OUCH website and join up. We're doing everything we can to get this "disease" known to the public and educate docs. You'd be surprised how many more docs know about CH and are diagnosing people correctly since we started yelling.

Hugs BD

Title: Re: New Member
Post by Giovanni on Feb 10^th, 2004, 5:48am

Welcome Adam,

Happy your cycle is ending and you have pf times ahead. In the meanwhile, research this site and the various posts and you'll learn a lot that will help you next time around.

Also, check this out: www.clusterbusters.com

Good luck.

John

Title: Re: New Member
Post by Edski_1 on Feb 10^th, 2004, 7:20am

Welcome Adam.

For me Topamax has been the preventative that has greatly reduced the pain of these bastards...hve not had to use an abrotive in over a month. A lot of people cn't tolerate the side effects, though...so it's not for everyone. The melatonin route sounds to be an easy cheap, route...

The 'shroom route sounds promising for a lot of folks, especially those who have very frequent episodid cycles and are chronics...the techniques for using them seem to have evolved quite a bit. It's not at all about doseing anf getting high. It is about getting well.

The suicide issue is real, and it's good to hear that you realized before it was too late that route was no answer. Despite the seemingly unbearable pain of these things they ARE NOT unbearable...WE ARE STRONG PEOPLE, and together we can beat this thing.

Welcome aboard. Together, better days are ahead! :)

Title: Re: New Member
Post by bobkip on Feb 10^th, 2004, 7:22am

Hi Adam,
Sorry tou're here but glad you found us. Oxygen is my only weapon for fighting the beast and it works great for me and my son.
best of luck,
Kip

Title: Re: New Member
Post by don on Feb 10^th, 2004, 7:52am

Quote:

You probably need at least 480mg a day, you can easily take twice that.

Unless your his Doc I'd be real careful with that kind of statement.

Quote:

I have considered suicide because of the intense pain

Willing to bet most of us have but it's a permanant solution to a temporary problem.

Title: Re: New Member
Post by Woobie on Feb 10^th, 2004, 8:11am

Hey there - Welcome!!!

Sounds like you finally found the place you need to be. Stick around a while - you'll make lots of life-long friends here.. who understand.

Tina -who loves this place!

:-*

Title: Re: New Member
Post by ZAIRA on Feb 10^th, 2004, 8:26am

Hi and Welcome!!! In this site you will find all support and necessary information to face CH. Get all courage…. Good luck, Zaira ;;D

Title: Re: New Member
Post by aprilbee on Feb 10^th, 2004, 8:44am

Welcome to our/your home! :)

Title: Re: New Member
Post by Little Deb on Feb 10^th, 2004, 8:51am

Welcome Adam! Introducing your new family! Glad to meet you. You have finally found your long lost home. We hope you like us and will stay for awhile.

Little Deb
25 years of CH, currently episodic
Raleigh, NC

Title: Re: New Member
Post by PatFan on Feb 10^th, 2004, 11:04am

I tried Depakote and it made things much worse for me..... Verapamil alone with an occasional Prednisone taper when things are really bad has worked wonders for me. O2 to abort. Good luck....

Title: Re: New Member
Post by dodie on Feb 10^th, 2004, 12:38pm

HI adam, I am new to this CH.com too. Sounds like we have alot in common. I tried verap. with pred. taper and it used to work but no more.
Your admitance of suicide touched me, I have often thought about it too when the pain becomes too much but had never expressed it to family or friends. Like you I am thankfull I am rational enough to know it would hurt my loved ones. Living with pain is difficult, but that which wont kill us makes us stronger. I have discovered lavender for relaxation. 100% oil mixed with H20 so as not to burn the skin on your head and inside of wrists. you stink but it helps you relax and be able to sleep it off. oxygen helps me too, i have not tried the tank I just open a window. good luck keep in touch
dodie ( new bee )

Title: Re: New Member
Post by Cerberus on Feb 10^th, 2004, 1:13pm

Welcome...

The advice already given is pretty good so far, I only want to stress the importance of OXYGEN, I know, thats what I said too "WTF is Oxygen gonna do?!"

Well it worked for me and many others to abort the pain so look into it.

Ramon

Title: Re: New Member
Post by amen on Feb 10^th, 2004, 1:25pm

Welcome and hang in there! You have found the right place.
Andrea

Title: Re: New Member
Post by Paigelle on Feb 10^th, 2004, 7:39pm

Well dive on in the pool! Lots to read and learn and lots of great people to meet.

Paige