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        Cluster Headache Help and Support >> Cluster Headache Specific >> CH and me.
        
(Message started by: MadJack on Sep 9^th, 2007, 10:55pm)

Title: CH and me.
Post by MadJack on Sep 9^th, 2007, 10:55pm

Oh and Hi! I'm new here!

Since the forum seems to be slow/unresponsive at time, I will try to keep this short, hoping that message will go through at first try. (Will copy/paste before posting just in case)

I started having my first episodes about 10 years ago. At first, it was thought my wisdom teeth were the culprit. Though my dentist told me a couple of years earlier there wasn't enough space for them to grow, it would be better to have them removed as soon as I would get some discomfort. Discomfort I did.

Oddly enough, after having those teeth extracted, the pain went away. For that year that is. About twelve months later, it came back. Well, guess what? They remove the other side's wisdom teeth. Again, history repeated itself...

The year after the same pain comes again. But, the dentist is beyond help. He's helpless literally, in all the senses. "It should be fine!!!" He almost yelled in a sympathetic display of helplessness.

For about six years I went from doctor to doctor, ER to ER. Nobody knew what was wrong with me. Since I moved a lot, I talked to many many doctors but to no avail. I suffered the terrible ordeal yearly.

One day, on the third year, I went through a old medical book my father had. I think it was dated 1964 or something. I found that vitamin B16 (iirc) had some effect to counter headaches/migraines. I didn't have a choice, That, or nothing, I decided that "that" was a good choice.

Funny. All the doctors I saw, a 20 years old book gave me a bit of solace. Not much, but just enough to dim the pain a bit. Problem was, I took so much of it, my pee smelled the vitamin... That was weird. It also lost its potency when the band played full tilt. But, I was happy to have it anyway.

At one point I was Rx'ed some med... Can't remember the name. But I do remember the side effect. My stomach couldn't stand much more than one meal a day and I was on the purple pill for over three months after so it could heal... No need to say I decided to stop that. Gruesome. It didn't work that good anyhow.

During vacations, visiting my parents, I get into an episode. No warnings before hand. No slope to the pain. First episode, full pain. From 0 to 10 on the Kip Scale in under 15 mins. ER time.

Finally a good doctor. A real good one. He's got a patient with similar symptoms or the other way around if you prefer. But... He's got to make sure it's the real McCoy. After some tests, O2 mainly, he's sure. I've got CH. Yay! Really?

That was some years ago and there wasn't much of any treatment then. Barely any now, so you can imagine... So, I know now that O2 will help, but what? Anything else? "Nope." he says. "Nothing that works good. Oxygen is your best bet." I grumble but hey, that's better than nothing.

Anyway... I was supposed to keep it short. Yeah right. *cough*

Now I take verapamil and I have to admit I was amazed to see it didn't work as good with others. I can safely say my attacks went down at least 50% Though it mostly diminishes the pain. It does not remove the whole episode. That, in itself, is a blessing.

For the last month or so, I'm back in the thick of it. But because of the verapamil, I barely feel the pain. It will change. Of that I'm sure. It will come back full throttle in a couple of weeks. If I'm lucky. I feel it becoming stronger every day. I keep it at bay, meditating, hoping, talking to my body and working with it. If I'm really lucky it'll pass without much more than what it is right now. Like last year. But I'm not a lucky person. Far from that. But who knows.

While the demon overtake me, I feed myself with lots of caffeine. It helps.

PS: I think the worst is one of my boss chuckling after I explained about the pain CH caused last year. I felt they were entitled to know since it was possible I had to miss days/weeks of work. One of the two owner took it seriously. The other... well, I hope he gets CH for a year. Just one episode a day. That'll show him.

Anyway. Nice to know you're here, all of you. :)

Title: Re: CH and me.
Post by sandie99 on Sep 10^th, 2007, 4:03am

Welcome to the nuthouse, Jack! :)
Sorry that you have ch, but I'm glad that you found your way here.

PF days,
Sanna

Title: Re: CH and me.
Post by phil_h on Sep 10^th, 2007, 5:58am

Welcome aboard Jack.... I'm sorry you needed to find this place.... now that you are here, you never need to be alone with your pain again . The family is wise , supportive and will help you on your journey . wishing you pfnad's . phil h

Title: Re: CH and me.
Post by DennisM1045 on Sep 10^th, 2007, 6:59am

Hey MadJack,

Welcome to the fray. I like your (short?) writing style. Sorry you have CH. Welcome to your new home. There are lots of things to try beyond Verapamil. They are all covered by posts here on the board so read a lot and ask a lot of questions. The folks here collectively posses more knowledge than the almost any other source you'll find. I hope your current cycle is a short one.

-Dennis-

Title: Re: CH and me.
Post by MadJack on Sep 10^th, 2007, 5:52pm

*bows*

Thanks for the welcome wagon! :)

Reading the introductions here were refreshing for me. What was written from some members seemed like a carbon copy of my own experiences and well, it gave me goosebumps. Like an idiot, I read those, smiling, unknowing why. But it felt good. I felt welcomed. *shrug* I'm not alone anymore. At least people really understand what I'm going through.

Thanks for being here.

@ Dennis: Expect to see more of my writing style in the following years... *wink* That's all I will say for now. :)

As of around 4pm, the ghost is following me... Making me nervous. He's whispering in my ear, telling me to appreciate those small moments with him. Because in the end, the beast will catch up with me. It's hungry. It hasn't fed for two years and it wants me. *gulp*

Bring it on!!!

*whimper* ;)

Title: Re: CH and me.
Post by DennisM1045 on Sep 10^th, 2007, 8:42pm

I know exactly what you mean. Knowing that I wasn't alone was the biggest turning point in dealing my with CH. I went 12 years before getting a diagnosis this past June. Found this site the same month. What a feeling. I love reading the intros of other newbies. It helps keep that revelation fresh.

Again, welcome home Jack.

-Dennis-

Title: Re: CH and me.
Post by clusterwife on Sep 10^th, 2007, 10:22pm

Welcome home, we've missed ya! Now, give me HUG!!!! Here's some coffee.........Leah.

Title: Re: CH and me.
Post by BarbaraD on Sep 11^th, 2007, 7:34am

Welcome Jack. Been saving a chair for you, but sorry you have to be here. I know the feeling when I found this little place (of course back in 98 we didn't even have paved roads in Clusterville - just a few dirt streets and no stop signs - not many folks here then - gee it's grown over the years!). People here a mightly friendly (cept for a few old grouches) and willing to help 24/7 so ask anything and someone will be along to answer you.

We KNOW how you feel cause we've all been there one time or nuther. Me, hormone patches worked for almost exactly two years and then bam - they hit back and NOTHING worked for two months (of hell) until I got in a hospital that was known for diagnosing and they got me diagnosed and stopped the cycle and told me what I was going to have to live with. I didn't leave a happy camper, but at least I KNEW what I was facing (and that's a BIG step).

By the time I went chronic (that hospital didn't tell me that could happen) I'd found a wonderful doc and super neuro. But then when everything was about to go to hell in a handbasket I found ch.com and have been here ever since. It's been a lifeline to a lot of us. For most of us we've found a "family" here who "understands" and that's something we didn't have before.

I haven't looked up where you live, but whereever it is - FIND a CHer in your area and MEET him/her (coffee, lunch, dinner - whatever). That's something that can't be explained, but meeting another CHer is an experience you just don't want to pass up and one you'll never regret. Over the years I've met 100s of CHers and have yet to meet a stranger or an axe murderer.

Anyhow, welcome again.

Hugs BD