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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> An Oklahoma Newbie
        
(Message started by: MCH on Jul 27^th, 2005, 4:04pm)

Title: An Oklahoma Newbie
Post by MCH on Jul 27^th, 2005, 4:04pm

Just thought I'd drop a post to tell everyone, Hey!

I found this site today after doing some research on Clusters.

I had my first outbreak in July 99. Coincidentally, it was right around my wedding date... ;;D.

I was convinced that I was experiencing migraines brought on by all the stress.

The first outbreak lasted through the honeymoon and on into August. From there on out, they hit me at around the same time year in, year out.

I was diagnosed with Clusters two years ago after a trip to the emergency room. I'm fairly good at hiding pain and forgetting about it, it just so happened that I was experiencing an attack while passing a hospital during a particulary hot day.

I have yet to try Imitrex, but so far, nothing has helped. My doc had me on Topamax for a while to prevent them, but that didn't work. The only thing that seems to help, is time.

I have noticed some things recently: intense reading will bring on an attack(just got Harry Potter's new one and can't even finish it... :D), milk products make mine worse and will also bring on an attack.

My attacks are normally around 11:00 at night. They will wake me up and I'll sneak into the living room to keep from waking my wife and children. My schedule goes through several changes. My first attack will be light and a week of no pain will follow. Then they will hit every night at the same time. Then they will return every third night. Currently, the schedule has gone to the dogs though, and I have no clue when my next one is going to be. I had one at work yesterday at 2:00 and then awoke at 4 this morning with another.

My attacks will last 3 hours at times, but the pain in my skull usually only lasts an hour or so. Once my pain leaves my temple/eye area, I can function somewhat normally.

I normally hit Pain Level 6 or 7. This year 3 attacks have been Level 9's.

My doc says mine are triggered by my sinus'. My nose has been broken 5 times and currently I have a deviated septum with barely any breathing space in my right nostril, which is the side the clusters hit.

Well, I guess that's enough about me... ;;D

Title: Re: An Oklahoma Newbie
Post by LeLimey on Jul 27^th, 2005, 4:24pm

Hello MCH Welcome to the board, I'm very sorry you had to come looking for us. Read up about the Oxygen - that is my favourite abortive, its just brilliant and it isn't shoving more meds into your body all the time.
I haven't got all the links to hand but someone will be along in a minute I expect with some really helpful pages for you.
I'm sorry this is brief but I just wanted to welcome you and let you know we will watch out for you and help too
Let us know how you're getting on okay?
Helen

Title: Re: An Oklahoma Newbie
Post by burnt-toast on Jul 27^th, 2005, 4:59pm

Welcom abord MCH

There's quite a bit of good treatment information available and folks who can point you in the right direction.

Sorry you had to drop in.

Have you been diagonsed with CH by your Doc.?

Have you had all the brain/head pics. done to rule out other physical causes?

Good luck finding relief.

Tom

Title: Re: An Oklahoma Newbie
Post by marlinsfan on Jul 27^th, 2005, 6:24pm

Ditto, and welcome. How are you able to hide pain when hit with a Kip level 9?!? Most of use need to jump and dance and bang our heads against a wall..

Limey is right on with the Oxygen. It's by far the favorite abortive for most. Topamax is a preventative, not an abortive, you so you need to find something that helps. Trex and O2 is what most of us use, but most of us prefer the oxygen as it is cheaper and harmless.

If you feel the attack coming on, you may want to try a strong dose of caffeine. Cold coffee, chugged hard and fast, works wonders for me. When the attacks come at night, it's too late, I wake up well into it.

Also, stay away from alcohol. It is a trigger for the majority of us here.

Good luck and pf wishes.
Jose

Title: Re: An Oklahoma Newbie
Post by Kirk on Jul 27^th, 2005, 7:51pm

Welcome MCH, sorry to see you here. As an abortive O2 and Imitrex are hard to beat. On the left you will find enough info on O2 to print out and give to your Doc. Imitrex Stat Dose injections will stop a CH in no time flat, but the stuff is expensive and can have bad side effects. In 36 years I've never found anything better than those two. But I'm no doctor. Take the quiz to the left and see if you can get a referal to a good neurologist. Print out everything you need from the column on the left and take it to your Doc and the Neuro. OK study time RTFM and get some help.

[smiley=smokin.gif]Linux rulz

Title: Re: An Oklahoma Newbie
Post by E-Double on Jul 27^th, 2005, 8:31pm

Hiya

This is a great resource to know like the back of your hand...print it out and give it to your doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

If you want an abortive with the least amount of danger/side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: An Oklahoma Newbie
Post by Kris_in_SJ on Jul 27^th, 2005, 8:52pm

Welcome to the family MCH.

Eric is right on with the links you should follow for appropriate treatment. Read them, memorize them and give them to your doc. The Future Drugs article saved my life last cycle.

You also might want to start a headache diary. In it, note the times of day (or night) attacks start and end, what you take and how it works, how intense they are, etc. Take this with you to the doc also.

Best of luck. Keep posting. PF Wishes,

Kris

Title: Re: An Oklahoma Newbie
Post by MCH on Jul 27^th, 2005, 9:47pm

Thanks for all the info guys.

Let me try and answer a few questions.

I didn't mean to say I was good at "hiding" pain literally. I just didn't complain when I wasn't experiencing it. I'd convince myself that being in pain, even excruciating pain, for an hour a day/night, wasn't the worst thing that could happen to me.

Over time, however, I got a little smarter and decided to get help.

Back in 2001, I believe, I was given all kinds of tests. My CTscan came back fine and I believe that's what finally made my doc diagnose CH.

He gave me a drug called Topamax that basically just postponed my attacks. Instead of 11 at night, I was getting them at 7 in the morning or 3 in the evening. Plus topamax really wore me out. I lost almost 25 pounds in a month, eyes stayed bloodshot, and cottonmouth all the time.

Well, I better get off here before reading too much triggers another.

Thanks again for all the warm welcomes.

Title: Re: An Oklahoma Newbie
Post by E-Double on Jul 27^th, 2005, 9:57pm

Welcome ab......damn forgot what I was gonna say...still recovering from Topamax since February [smiley=laugh.gif]

Just kidding....

Good to have another bud!!!

E